family engagement quality improvement project (family ... handouts combi… · project...

Family Engagement Quality Improvement Project

(Family-Centered Care Quality Improvement Project, Round Two)

By January 2017, 10 pediatric primary care practice teams will work individually and collaboratively to

test, implement, disseminate, and plan to sustain strategies that lead to improved family engagement in

clinical practice through enhanced shared decision-making and connection of families to appropriate

supports and services.

Participating pediatric primary care practice teams will make improvements so that:

1. 80% or more patients have documentation in their medical record that patient/family concerns

were elicited at the most recent health supervision visit.

2. 80% or more patients have documentation in their medical record that patient/family concerns

were addressed at the most recent health supervision visit or a plan to address the concerns

was made.

3. 80% or more patients have documentation in their medical record that family strengths were

identified and discussed at the most recent health supervision visit.

4. 80% or more patients have documentation in their medical record that a post-visit medical

summary or a comprehensive care plan was created or updated/maintained at a most recent

health supervision visit.

5. 80% or more patients have documentation in their medical record that a current copy of their

post-visit medical summary or comprehensive care plan was reviewed through an active form of

family engagement and offered to patient/families at a most recent health supervision visit.

6. 80% or more of patients have documentation in their medical record that families received a

follow-up discussion of age-appropriate screening results on the same day as the screening.

7. 80% of parents/families will indicate that their practice honored or respected parent/family

values and beliefs, as measured through a post-visit family survey.

8. 80% of parents/families will indicate that information about their child’s health was explained in

an easy to understand manner, as measured through a post-visit family survey.

9. 80% of parents/families will indicate that individuals providing care to their child showed

respect for the family, as measured through a post-visit family survey.

10. 80% of parents/families will indicate that practice staff treated them with dignity and respect, as

measured through a post-visit family survey.

11. 80% parents/families will indicate that individuals providing medical care to their child involved

families in decisions about their child health, as measured through a post-visit family survey.

Balancing Measures:

1. Think about the changes your team has implemented as part of the “Family Engagement Quality

Improvement Project.” Because of this project, the amount of time it takes staff and

pediatricians to communicate with patients and families has taken:

Much less time No change Much more time

5 4 3 2 1


Improvement Project.” Because of this project, the care team’s confidence about engaging

families in shared decision-making has become:

Much more confident No change Much less confident

5 4 3 2 1

A project of the National Center for Medical Home Implementation (NCMHI) in the AmericanAcademy of Pediatrics (AAP). The NCMHI is a cooperative agreement between the AAP and theMaternal and Child Health Bureau of the Health Resources and Services Administration. This 10-month quality improvement project will provide participating pediatric practices with toolsand strategies to improve family engagement in practice through enhanced shared decision-makingand connection of families to appropriate supports and services. Background:

The NCMHI plans to engage primary care practices who care for pediatric patients 0-18 years of ageand have diverse backgrounds and experiences. Specifically, 10 practice teams are being recruitedwith four core members per team. Team members will include a pediatrician team leader,nursing/non-pediatrician clinial staff, administrative/front desk staff, and a parent/caregiver. Theanswers you provide in this application will help the NCMHI select a diverse group of pediatricpractices to be involved in this quality improvement project.

One person from each team will need to complete the application; however, you are required to listother participants on your team in the application for a firm commitment from those involved(family/caregiver partners can be identified after submission of this application).

Project Implementation will occur May 2016 – February 2017. Each practice team is required to:

Participate in a 60-minute orientation webinar on April 27, 2016 at Noon Eastern or April 28,2016, at Noon Eastern, and complete associated pre-work.Complete a web-based pre-implementation surveyParticipate in an in-person Learning Session June 3-4, 2016, at or near the AAP Headquartersin Elk Grove Village, IL (travel expenses will be covered)Regularly collect data by reviewing medical records (20 at baseline, 10 throughout the projectaction period, per practice)Distribute post-visit family surveys (10 surveys at baseline and per action period, per practice)Test changes and improvements in practices related to family engagementSubmit findings and progress through monthly progress reports (six reports in total)Engage in education on family engagement via participation on one-hour monthly educationalconference calls/webinarsParticipate on two one-hour quality improvement coaching calls with the project’s qualityimprovement advisorComplete a post-implementation surveyParticipate in team telephone interview describing your experience participating in the project(optional)Share progress and results of this project with practice staff and leadership


It will take you approximately 15 minutes to complete this application. This application contains atotal of 16 questions separated into the following 4 sections:

Part One: Practice and Team CompositionPart Two: Practice DemographicsPart Three: Family EngagementPart Four: Additional Information

In order to progress through this application, please use the following navigation buttons:

Click the NEXT button to continue to the next page.Click the PREVIOUS button to return to the previous page.Click the DONE button to submit your application.

If you have any questions, please contact:

Alex Kuznetsov, RDProgram ManagerNational Center for Medical home ImplementationAmerican Academy of [email protected]/434-7087

Each practice team is required to have four core team members participate in this project. These team members include the following:

A primary care pediatrician (team leader)Nursing/Non-pediatrician clinical staffAdministrative/Front desk staffParent/Caregiver partner*

*Please note: All participating practices are required to identify a parent/caregiver partner as amember of the core improvement team. If you are unable to identify a parent/caregiver partner atthe time of application, you may still submit an application, however you will be required to identifyand bring a parent/caregiver partner to the project’s in-person Learning Session June 3-4, 2016.

Part One: Practice and Team Composition

1. Practice Name*

2. Practice Address*

Please identify the name and profession of each team member below.

First Name

Last Name

Title

Email Address

Phone Number

3. Primary Care Pediatrician/Team Leader*

First Name

Last Name

Title

Email Address

Phone Number

4. Nursing/Non-pediatrician clinical staff*

First Name

Last Name

Title

Email Address

Phone Number

5. Administrative/Front Desk Staff*

First Name

Last Name

Title

Email Address

Phone Number

6. Parent/Caregiver Partner

7. Who is completing this application?*

Pediatrician

Nursing/Non-pediatrician Clinical Staff

Administrative/Front Desk Staff

Parent/Caregiver Partner

Other (please specify)

Part Two: Practice Demographics

8. What is the geographic location of your practice?*

Urban

Rural

Suburban

9. What is your practice size (by # of physicians)*

Small (1-3 physicians)

Medium (4-6 physicians)

Large (more than 7 physicians)

10. What is your practice type?

Independent Practice

Hospital-Affiliated Practice

Affiliated with a University/Medical School

County Public Health Department

Federally Qualified Health Center


11. What is the total number of patients in your practice?*

Less than 5% 5 - 25% 26 - 50% 52 - 75% 76 - 100%

White

Black or AfricanAmerican

Asian

Native American orOther Pacific Islander

Hispanic

More than one race

12. Please estimate the percentage of children you care for with the following racial backgrounds:*

Less than 5% 5 - 25% 26 - 50% 51 - 75% 76 - 100%

English is NOT theirprimary language

English is their primarylanguage

13. Please estimate the percentage of children in your care for whom:*

Part Three: Family Engagement

14. Why is your practice interested in participating in this quality improvement project?*

15. Have you shared your intention to participate in this project with your practice leadership (such as theclinic's Chief Executive Officer, Executive Director, among other leadership)?*

Yes

No

N/A (Applicant is/represents senior leadership from the practice)

16. How familiar/knowledgeable is your practice with the concept of family engagement?*

Not familiar/Not Knowledgeable

Somewhat familiar/Somewhat Knowledgeable

Very familiar/Very Knowledgeable

Part Four: Additional Information

17. If selected, practice teams are required to participate in one of the project's orientation webinars.Please indicate what date/time your practice team will be able to attend the orientation webinar.*

April 27, 2016, Noon - 1 pm Eastern

April 28, 2016, Noon - 1 pm Eastern

18. If selected, all members of each practice team are required to participate in the Learning Session heldat or near the American Academy of Pediatrics Headquarters in Elk Grove Village, IL, from Friday June 3,2016 (late afternoon) - Saturday, June 4, 2016 (morning and early afternoon). All travel expenses will bereimbursed.

*

Yes, all members of my practice team will be able to participate in the learning session

No, all members will not be able to participate in the learning session, however some members will be able to attend

19. Will your team be required to obtain separate approval from your organization's Institutional ReviewBoard (IRB) in order to participate in this project?*

Yes

No

I am not sure


A project of the National Center for Medical Home Implementation in the American Academy of Pediatrics Funded by a cooperative agreement from the Maternal and Child Health Bureau,

Health Resources and Services Administration

The National Center for Medical Home Implementation (NCMHI) in the American Academy of Pediatrics is recruiting 10 primary care pediatric teams to participate in a quality improvement project focused on family engagement in practice. The quality improvement project involves the following components: 1) collecting data using medical record reviews and post-visit family surveys; 2) participating in a series of facilitated discussions related to family engagement, including in-person learning sessions; and 3) conducting a series of activities designed to elicit measureable changes related to family engagement over the project period.

Practice teams of 4 members each are being recruited. Each team must include the following team members: a pediatrician, nursing/non-

pediatrician clinical staff, administrative/front desk staff, parent/caregiver partner.*

This project has received approval from the American Academy of Pediatrics (AAP) Institutional Review Board (IRB). No identifiable protected health information is being collected for this project; therefore, HIPAA authorization will not be needed from patients in order for you to participate.

Project implementation will occur from May 2016 – February 2017. Practice teams selected to participate will:

Participate in a 60-minute orientation webinar on April 27, 2016 or April 28, 2016 at Noon Eastern Time

Complete a web-based pre-implementation survey

Participate in an in-person Learning Session June 3-4, 2016, at or near the AAP Headquarters in

Elk Grove Village, IL (travel expenses will be covered)

Regularly collect data by reviewing medical records (20 at baseline, 10 throughout each Action Period)

Regularly collect data by distributing post-visit family surveys (10 surveys at baseline and during each action period)

Test changes and improvements in practice related to family engagement

Submit findings and progress through monthly progress reports

Engage in education on family engagement via participation on one-hour monthly educational conference

calls/webinars

Participate on two one-hour quality improvement coaching calls with the project’s quality improvement advisor

Complete a web-based post-implementation survey

Participate in team telephone interview describing your experience participating in the project (optional)

Share progress and results of this project with practice staff and leadership

Please indicate your interest in participating by completing the application located at: https://www.surveymonkey.com/r/familyengagementqiproject

* If a parent/caregiver is not identified at the time of application, teams can still complete the application. All teams must identify a parent/caregiver partner by the in-person Learning Session June 3-4, 2016.

Applications are due from project teams by April 15, 2016. Only one application per practice-based project team is required.

Applications will be reviewed by members of a project oversight work group.

Applicants will be notified of their acceptance status by April 22, 2016

https://www.surveymonkey.com/r/familyengagementqiproject

Family Engagement Quality Improvement Project: Recruitment Invitation Email

Dear (Insert Recipient Name Here):

The National Center for Medical Home Implementation (NCMHI) in the American Academy of Pediatrics

(AAP), via a cooperative agreement with the Maternal and Child Health Bureau is recruiting 10 primary

care pediatric practice teams for a quality improvement project focused on family engagement:

Participate in a 60-minute orientation webinar on April 27, 2016 or April 28, 2016 at Noon

Eastern Time

Complete a web-based pre-implementation survey

Participate in an in-person Learning Session June 3-4, 2016, at or near the AAP Headquarters

in

Elk Grove Village, IL (travel expenses will be covered)

Regularly collect data by reviewing medical records (20 at baseline, 10 throughout each

Action Period)

Regularly collect data by distributing post-visit family surveys (10 surveys at baseline and

during each action period)

Test changes and improvements in practice related to family engagement

Submit findings and progress through monthly progress reports

Engage in education on family engagement via participation on one-hour monthly

educational conference

calls/webinars

Participate on two one-hour quality improvement coaching calls with the project’s quality

improvement advisor

Complete a web-based post-implementation survey

Participate in team telephone interview describing your experience participating in the

project (optional)

Share progress and results of this project with practice staff and leadership

The goal of this project is to increase family engagement in clinical practices through shared decision

making and connection of families to appropriate supports and services.

The attached document includes additional information about the project and specific details regarding

how to obtain and complete the project application. Applications are due by April 15, 2016.

For more information, contact Alex Kuznetsov, Program Manager, at [email protected].

mailto:[email protected]

1


American Academy of Pediatrics

CONSENT TO PARTICIPATE FORM

The Family Engagement Quality Improvement Project is being conducted by the National Center for

Medical Home Implementation in the American Academy of Pediatrics. The Family Engagement Quality

Improvement Project is funded by a cooperative agreement from the Maternal and Child Health Bureau of

the Health Resources and Services Administration.

PURPOSE OF THE PROJECT

The purpose of the Family Engagement Quality Improvement Project is to identify whether providing

pediatricians and their staff with the tools and resources necessary to improve family engagement in

practice, using quality improvement methods, will improve care and systems in practice. Data collection

will involve patient record review, post-visit family surveys, monthly narrative surveys, monthly

educational webinars, quality improvement coaching calls, and optional qualitative interviews.

HOW WE SELECTED YOU

You were selected because the application you submitted met the criteria for participation. A total of 10

pediatric primary care practices were selected from across the country.

WHAT WE WILL ASK YOU TO DO

As a participant of the Family Engagement Quality Improvement Project, you will be asked to:

• Participate in a 60-minute orientation conference call on April 27, 2016 or April 28, 2016, at

Noon Eastern time, and complete necessary pre-work.

• Complete a pre-implementation survey in partnership with other members of your practice

team.

• Review 20 patient medical records for patients age 0-18 years seen for health supervision

visits as part of the baseline data collection period using the Academy’s Quality Improvement

Data Aggregator (QIDA). Instructions will be given to you and your team on how to utilize

the QIDA).

• Collect 10 post-visit family surveys from 10 family members with patients age 0-18 years

seen at the practice for health supervision visits at baseline and throughout each month of the

project’s 6-month action period. Enter results from post-visit family surveys into QIDA using

instructions provided by project staff. All surveys will be collected in an anonymous manner

so that individual families cannot be identified.

• Attend a 1.5-day Learning Session on June 3-4, 2016, at or near the AAP Headquarters in Elk

Grove Village, IL (all travel expenses will be reimbursed).

• Review 10 patient medical records each month during the project’s 6-month action period.

Review of patient records will be conducted using the Academy’s QIDA.

• Learn the Model for Improvement and implement Plan-Do-Study-Act (PDSA) cycles

throughout the 6-month action period.

• Devote necessary resources and time to testing and implementing changes in the practice over

a specified 6-month action period and work to obtain buy-in from all members of the practice.

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• Work with your practice team to make appropriate changes in the structure of how care is

monitored and delivered to patients and families.

• Participate in monthly 60-minute educational webinars; share lessons learned, challenges, and

success with other practice teams.

• Participate in at least two 60-minute quality improvement coaching calls.

• Complete a Monthly Progress Report each month in partnership with other members of your

practice team.

• Attend a 1.5-day workshop (Learning Session 2) in January 2017 (date is tentative) at or near

the AAP Headquarters in Elk Grove Village, IL (all travel expenses will be reimbursed).

• Share results and progress about the project with other practice staff and physicians, including

practice leadership.

• Participate as a team in a telephone evaluation interview at the end of the project, discussing

your experiences with participating in, and satisfaction with, the project.

• If necessary, seek local Institutional Review Board approval for participation prior to the first

in-person Learning Session.

• Lead pediatrician only: serve as Local Leader in the attestation process required by the

American Board of Pediatrics (ABP) for Part 4 Maintenance of Certification (if approved).

Includes providing each pediatricians in practice interested in participating for MOC credit a

document describing the requirements of their participation, monitoring pediatrician

participation, and attesting that they met the project’s completion criteria.

PROJECT DURATION

The project will be implemented over the course of ten months, from May 2016 – February 2017.

RISKS OF PARTICIPATION

This project is considered to be minimal risk. This means the risks and discomfort associated with

participating in this project are no greater than those ordinarily encountered in day-to-day life or during

the performance of routine physical or psychological examinations or tests.

Potential loss of confidentiality

Any time information is collected, there is a potential risk of loss of confidentiality. Every effort will be

made to keep your information confidential, however this cannot be guaranteed. (See confidentiality

section below.)

Publications on the findings of this project will report data at the aggregate level only. No individual-level

participant or parent/caregiver data will be reported.

BENEFITS OF PARTICIPATION

While there are no direct benefits to you for participating in this project, you will receive results of the

patient record reviews as well as educational materials and resources related to delivering and improving

family-centered care in your practice. You will also have the opportunity to learn from peers and experts

in the field.

COMPENSATION

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You will not be paid or compensated in any way for participating in this project.

CONFIDENTIALITY

Data collected will not include Protected Health Information. For any research publications resulting from this

work, practices (or individuals) will not be linked with the data and only practice level data (aggregate) will be

reported. No patients or practice staff will be identified in any report or publication about this study. Although

every effort will be made to keep research records private, there may be times when federal or state law

requires the disclosure of such records, including personal information. This is very unlikely, but if disclosure

is ever required, the AAP will take all steps allowable by law to protect the privacy of personal information.

For quality improvement purposes, data will be aggregated by practice. In addition, practices will be identified

by name in communication for quality improvement purposes with project staff working on the project. You

will be able to use a secure online module to view reports of your practice’s aggregate data, as well as

aggregate data from other practices. Similarly, other participating practices will be able to view your practice’s

aggregate data via the secure online module. Data will be stored on a secure network with password protection.

For research purposes, all data will be reported in aggregate, and individual practice data will not be

identifiable. Potential publications may include a conceptual model of key barriers and potentially useful

strategies that emerged from this project. Practice names will only be used in the acknowledgement section of

any potential publications.

VOLUNTARINESS

Your participation in the project is completely voluntary. You may refuse to participate, or you may stop

participating at any time and for any reason, without any penalty or impact. The investigators also have

the right to stop your participation at any time. This could be because you have failed to follow the

commitments described above or because the entire study has been altered or stopped.

WHOM TO CONTACT

This study was approved by the AAP Institutional Review Board. If you have any questions about the

project, please contact Alex Kuznetsov, Program Manager (contact information below). If you have any

questions or concerns about your rights as a research subject, please contact Erin Kelly, AAP Institutional

Review Board Administrator at 847/434-4075.

CONSENT TO PARTICIPATE

I have read this statement, and I understand what it says. I agree to participate in this study under the

conditions outlined above.

Please check ONE box to indicate your consent:

I will participate in the full study, including the phone interview

I will participate in the study but not the phone interview.

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Signature Date ______________________________________

Printed Name _______________________________________

If you choose to participate in this project, please check the appropriate box, sign, scan and e-mail to:

Alex Kuznetsov

Program Manager

Email: [email protected]

Phone: 847/434-7087

You may also send a fax to:

Beth Evans

Administrative Assistant

Division of Children with Special Needs


Fax: 847/228-5034

Consent forms must be received no later than May 2, 2016.

Please keep one copy for your files.

If you would like further information about this project, contact:

Alex Kuznetsov

Program Manager


Phone: 847/434-7087




Medical Record Review Tool

Patient/Family Concerns

1. Is there documentation in the medical record indicating that patient/family concerns were

elicited at the most recent visit? (Skip pattern: If yes, continue to Question 2. If No, skip to

Question 3)

YES NO

2. Is there documentation in the medical record indicating patient/family concerns were addressed

at the most recent visit or a plan to address the concerns was made?

YES NO

Family Strengths

3. Is there documentation in the medical record indicating that family strengths were identified

and discussed during the most recent visit?

YES NO

Post-visit Medical Summary and/or Care Plan

4. Is there documentation in the medical record indicating that a post-visit medical summary or a

comprehensive care plan was created or updated/maintained during a recent visit? (Skip

pattern: If yes, continue to Question 5. If No, skip to Question 6)

YES NO

5. Is there documentation in the medical record indicating that a post-visit medical summary or

comprehensive care plan was reviewed through an active form of family engagement and

offered to the patient/family during a recent visit?

YES NO

Communication of Age-Appropriate Screening Results

6. Is there documentation in the medical record that age-appropriate screening results were

discussed with the family on the same day as the visit?

YES NO


Medical Record Review Tool Tip Sheet



elicited at the most recent visit?

Details: What Counts?

Family/caregiver were asked at least once about their concerns using one or more of the

following methods:

Family/caregiver was asked about concerns on the phone when visit was scheduled

Pre-visit questionnaire was made available (electronic or paper copy) prior to the visit

Questionnaire eliciting concerns was distributed at check-in or during the encounter/visit

Face-to-face communication with family/caregiver during visit asking about concerns

Utilizing Patient Portals with families to obtain information about concerns prior to an office visit

Documentation in the medical record can include a checkbox or free text.




Patient/family concerns can be addressed in multiple ways including face-to-face interaction,

resource referral, patient/family education, scheduling a follow-up visit to address specific

concerns, etc.


Family Strengths




Family strengths build an environment that promotes optimal child and youth development.

Below are a few examples of family strengths and how to identify them with families during

patient encounters (adapted from the Strengthening Families Initiative):

http://www.cssp.org/reform/strengthening-families/basic-one-pagers/Strengthening-Families-Protective-Factors.pdf

Parental Resilience: Identifying family/caregiver ability to solve problems, build and

sustain relationships, and seek help when necessary.

Social Connections: Identify social supports that families/caregivers have created and

have access to, including but not limited to friends, family, neighbors, and community

members.

Concrete Supports in Times of Needs: Identify supports that families/caregivers have in

order to thrive. These include needs in times of crisis as well as basic economic needs

such as food, shelter, clothing, and health care.

Knowledge of Parenting and Child Development: Identify activities that

families/caregivers are doing with their child that are developmentally appropriate

Social and Emotional Competence of Children: Identify activities that

families/caregivers are doing to ensure child/youth’s ability to interactive positively with

others.

Identified family strengths should be documented and discussed with the family. This discussion can

be documented in a medical record with a checkbox or free text.



comprehensive care plan was created or updated/maintained during a recent visit?


A post-visit medical summary is a history of medical information that includes the following:

Basic demographics and contact information

o Patient and family, with guardianship identified, if applicable

o Contact information for patient and family, including cell phone numbers

and email addresses

o Medical Home

o Emergency Contacts

Key medical, surgical, and injury history

Current medications, including medication reconciliation

Allergies

Immunization record

Insurance information

Special instructions

Patients with chronic conditions benefit from an expanded post-visit medical summary that

includes the following:



o Medical home, including primary care provider and care coordinator

o Emergency contacts

o Specialists

o Therapists

o Home health agency

o School attended and school contacts

Chronic condition(s)

o Secondary diagnoses

o Complications


o Presence of surgically implanted devices or prostheses

o Important hospitalizations

o Key laboratory data and imaging results

Medications

o Current medications, including medication reconciliation

o Past medications and reactions

o Medication precautions, including medications needed during procedures

(e.g., sub-acute bacterial endocarditis prophylaxis) and those to be avoided

Special diets and dietary restrictions

Immunization Record

For patients with complex conditions, a comprehensive care plan includes an expanded medical

summary, an emergency treatment plan, and a dynamic, explicit plan of care, also known as an

action plan.

Documentation in the medical record could include a checkbox or free text.





Active forms of family engagement can include but are not limited to the following:

Teach-back methodology

Motivational interviewing

Ask-me-3 framework

All of the aforementioned family engagement strategies are considered ways to enhance shared

decision-making with families. Documentation in the medical record could include a checkbox or

free text.




Details/What Counts?

Age-appropriate screenings include any/all listed in the Bright Futures Periodicity Schedule, as

well as other screenings related to social determinants of health, as appropriate and necessary.

Negative and positive results should be discussed with families/caregivers, documentation in

the medical record could include a checkbox or free text.

https://www.aap.org/en-us/Documents/periodicity_schedule_oral_health.pdf


Post-visit Family Survey Questions

1. During today’s visit, did this practice honor or respect your values and beliefs?

a. Yes

b. No

2. During today’s visit, did the people providing medical care to your child explain things about

your child’s health in a way that was easy to understand?

a. Yes

b. No

3. During today’s visit, did the people providing medical care to your child show respect for what

you and your family had to say?

a. Yes

b. No

4. During today’s visit, did clerks, receptionists, and other clinic staff at this practice treat you

with dignity and respect?

a. Yes

b. No

5. During today’s visit, did the people providing medical care to my child involve me and my

family in decisions about my child's health?

a. Yes

b. No

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Pre- and Post- Implementation Survey (Will be input into SurveyMonkey)

Welcome to the Family Engagement Quality Improvement Project!

We would like to find out some general information about the family engagement activities within your

office setting. Please complete this pre-implementation survey after the orientation webinar. The

survey will take no more than 15 minutes of your time. Only one survey is needed per practice team.

Your survey responses will be kept strictly confidential. We will never link your responses to your name

in reports or anywhere else.

If you have any questions, please contact Alex Kuznetsov, RD, at 847-434-7087 or [email protected].

In order to progress through this survey, please use the following navigation buttons:

-Click the Next button to continue to the next page.

-Click the Previous button to return to the previous page.

-Click the Done button to submit your survey.

1. Please enter your practice name:

PART ONE: Family Engagement Activities

We would like to know what types of family engagement activities you are currently involved with.

2. Which of the following methods for gathering patient and family feedback does your practice

currently use to support or inform its interactions with your patients and families? (select all that apply)

Family Advisory Council/Committee

Patient Suggestion Box

Patient/Family Focus Groups

Patient Satisfaction Surveys

Ask Patients/Families for informal feedback at visits

We have no system in place to obtain regular feedback from patients/families


3. For any of the methods you checked in the previous question, how does your practice use the

information to support or inform its interactions with your patients and families? (select all that apply)

Review feedback to understand patient/family perspective and assess if patient/family needs

are being met


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We use the information to test/implement changes

Improvement teams review feedback, plan and test improvement ideas to incorporate

patients’/families perspectives

We have not yet used the feedback from patients/families


4. In your direct interactions with your patients and families, describe your approach to identifying their

culture, beliefs, values, and practices (select all that apply):

Use of a patient/family history or demographic form

Use of open-ended questions

Use listening and other communication skills to assess

Use direct observation

We do not routinely obtain this information from patients


5. Do you provide a community resource list to your patients who may need it? (yes/no)

6. If yes, please describe the type of information included on the community resource list (select all that

apply):

Education resources

Child development/behavior resources

Peer supports or Family-to-Family health information centers

Safety resources

Physical health resources

Teen resources


7. Do you have a system in place for tracking and following up on referrals to appropriate supports and

services for patients/families/caregivers (these supports could include community resources, peer-to-

peer supports, medical specialists, etc)? (yes/no)

If yes, please specify the system you have in place for tracking and following up on referrals

to appropriate supports and services for patients/families/caregivers:

o Checkbox in patient medical record

o Referral fax back form

o Requests for patient summary

o Follow-up phone calls

o Patient registry

o Other

9. Does your practice create a post-visit medical summary or comprehensive care plan for

patients/families at every visit (yes/no)?

10. Does your practice review and update the post-visit medical summary or comprehensive care plan

with the patient and family at each visit? (yes/no)

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11. Does your practice have processes to communicate age-appropriate screening results and their

implications to patients and families? (yes/no)

PART TWO: Partnering with Patients and Families

11. “Shared decision making” is a collaborative process that allows patients and their health care

providers to make health care decisions together, taking into account the best scientific evidence

available, as well as the patient’s values and preferences.

A model for shared decision making includes: 1) introducing choice; 2) describing options; and 3) helping

patients explore preferences and make decisions.

Based on this definition, how often would you say you engage in shared decision making with the

patients and families in your care?

Never

Rarely

Occasionally

Frequently

Always

12. How do you implement shared decision making in your office (select all that apply):

Discuss options with patients and families

Discuss the pros and cons of various treatments with patients and families

Use Motivational Interviewing (MI) techniques

Use existing knowledge of patient preferences

Use decision aids in practice

I do not use any shared decision making techniques


13. If you have any other information you would like to share, please enter it below:

14. How would you rate your current (right now) level of overall knowledge about family engagement

activities on a scale of 1 to 10, where 1 is the lowest and 10 is the highest?

Thank you for your participation and feedback! Please return completed evaluation to AAP staff at the end of the Learning Session.

Family Engagement Quality Improvement Project Learning Session Evaluation

June 3 – 4, 2016

1. Overall, to what extent did the Learning Session meet your expectations with regard to the following?

Exceeded (5)

(4)

Met (3)

(2)

Failed (1)

a) Content of the presentations

b) Organization of the presentations

c) Effectiveness of the teaching and instructional methods

d) Logistics (location, hotel, meeting room)

Comments___________________________________________________________________________________________

2. Indicate your agreement with each of the following statements about the Learning Session.

Strongly Agree

(5)

(4)

Neutral

(3)

(2)

Strongly Disagree

(1)

a) There was enough time to meet as a team

b) There was enough time dedicated to educational presentations/lectures

Comments ___________________________________________________________________________________________

3. How would you rate each of the following sessions in terms of usefulness in your practice?

Very Useful

(5)

(4)

Somewhat Useful

(3)

(2)

Not Useful (1)

Family Engagement Overview (Hunting)

Quality Improvement in the Real World (Gubernick)

Storyboard Presentations

Topical Session 1

Topical Session 2

Report on Baseline Data and Pre-Implementation Survey (Gubernick)

Parent/Caregiver only: Break-out session(s)

4. What part(s) of the Learning Session did you find most valuable?

5. Please suggest any topics you think we should cover during the QI project via email and/or during monthly calls.

6. Share any additional comments or feedback on the Learning Session.

Monthly Progress Report Template (Will be input into SurveyMonkey)

Date Due:

The Monthly Progress Report (MPR) details the tests of change related to family engagement practice

teams undertook during the action period and any success stories or challenges they encountered.

Practice Name:

Month of Report:

Project Aim Statement: By January 2017, 10 pediatric primary care practices will work individually and

collaboratively to test, implement, disseminate, and plan to sustain strategies that lead to improved

family engagement in clinical practice through enhanced shared decision-making and connection of

families to appropriate supports and services.

The purpose of this report is to obtain the following information from practice teams:

1. Describe tests of change and identify resources and tools utilized to test changes.

2. Identify successes and barriers in implementing tests of change.

3. Share what you learned this month.

4. Rate the impact of the project on patient/family communication and health care team

experience in caring for patients and families.

TESTS OF CHANGE AND TOOLS

Please identify the changes you have tested within the past month. For each, describe changes, the

impact/learning from this change you have made, and/or the tools you have tested.

1. Has your practice developed and/or modified one or more decision aid(s) in practice (modification

could include adding a practice name or logo to a decision aid)? (yes/no)

o If yes, please specify what decision aid was developed and/or modified in practice.

Example 1 (from change package)



Other

o Please describe how you developed/modified the decision aid in practice.

2. Has your practice implemented one or more decision aid(s) in practice? (yes/no)

o If yes, please specify what decision aid your practice implemented.

o Please describe how you implemented the decision aid(s) in your practice.

4. Does your practices have a system in place for tracking and following up on referrals to appropriate

supports and services for patients/families/caregivers? (yes/no)

o If yes, please specify the system you have in place for tracking and following up on referrals to

appropriate supports and services for patients/families/caregivers:

o Checkbox in patient medical record

o Referral fax back form

o Requests for patient summary

o Follow-up phone calls

o Patient registry

o Other

o Please describe how you implemented the system for tracking and following up on referrals to

appropriate supports and services for patients/families/caregivers.

5. Does your practice have an engaged parent/caregiver partner that is a core member of the

improvement team? (yes/no)

o If yes, please provide one or more example(s) of how the parent/caregiver partner was

engaged in improvement team activities throughout this Action Period.

6. Does your practice have a system in place for obtaining feedback from families on patient/family

experience? (yes/no)

o If yes, please select an example of what this system is:

Family advisory group/council

Post-visit family experience survey

Parent/family focus groups

Ask families for informal feedback at visits

Suggestion boxes

Other (please describe)

o Please describe how you implemented the system(s) for obtaining feedback from

families on patient/family experiences.

7. Did your practice host a “lunch and learn” with a community-based organization that included

practice staff and/or family members? (yes/no)

o If yes, please describe what you learned at the “lunch and learn” and any changes you plan to

implement based on what you learned.

o Please select the focus of the community-based organization

Child-Care

Housing Assistance

WIC

Nutrition

Title V

Local Family to Family Health Information Center (F2F HIC)


8. Did your improvement team share project results and progress with the rest of the practice/clinic

staff (this can also include parents/caregivers)? (yes/no)

o If yes, please identify how results/progress were shared.

Discussing run charts during monthly team meetings

Sharing challenges and success during team huddles

Highlighting project results in practice newsletter

Showcasing project results on practice bulletin board


9. What other tests of change did your practice test/implement related to shared-decision making?

Shared decision making is a collaborative process that allows patients and their health care providers to

make health care decisions together, taking into account the best scientific evidence available, as well as

the patient’s values and preferences.

A model for shared decision making includes: 1) Introducing choice; 2) describing options; 3) helping

patients explore preferences and make decisions.

10. What other tests of change did your practice test/implement related to connecting families to

appropriate supports and services?

OVERALL ASSESSMENT AND FUTURE TOPICS

11. Share something important, surprising, or successful your team learned/implemented this month.

12. What was the biggest barrier/challenge your team encountered this month? Were you able to

overcome it? If so, how?


Improvement Project.” Because of this project, the amount of time it takes staff and physicians to

communicate with patients and families has taken:

Much less time No change Much more time

5 4 3 2 1


Improvement Project.” Because of this project, the care team’s confidence about engaging families in

shared decision-making has become:

Much more confident No change Much less confident

5 4 3 2 1

15. What issues or topics would you like to discuss on a monthly project team call or through the project

email list?

Family-Centered Care Quality Improvement Project Call Evaluation: Patient AdvisoryPanels

Thank you for attending the call, "Patient Advisory Panels"

Please help us assess our family-centered care project by completing this brief evaluation form. It should take no more than 10minutes of your time. You will need the unique identification number provided to you in your orientation materials.

Your responses will be kept strictly confidential. We will never link your responses to your name in reports or anywhere else. Thesurvey is voluntary and you may choose to end it at any time or not answer a question, for whatever reason.

If you have any questions please contact Pam Kelley, PhD at Kelley Analytics, (732) 742-8908 or [email protected].


- Click the Next button to continue to the next page.- Click the Previous button to return to the previous page.- Click the Done button to submit your survey.

1


1. Please enter your unique identification number:

2

Part One: Reactions to the Call


Stronglydisagree Disagree

Neitheragree nordisagree Agree

Stronglyagree

This call changed the way I think aboutpatient advisory panels.

I feel I have learned a great deal fromparticipating in this call.

Most or all of the content was a review orrefresher for me.

2. Please tell us how much you agree with the following statements about the call youjust attended:

3


3. If you feel the call changed the way you think, please tell us how:

4


I felt this:

Energized

Curious

Bored

Inspired

Annoyed

Overwhelmed

Motivated

Skeptical

Amused

Surprised

Engaged

Tired

Frustrated

In agreement withthe facilitators

In disagreementwith thefacilitators


4. During the call I felt: (Select all that apply)

5. Briefly explain why you selected the choices you did.

5

Part Two: Learning Objectives


Instructions: For each item below, compare how you feel NOW that the call has ended with how you felt BEFORE the call by circling anumber on each scale, where 0 is the lowest and 10 is the highest. (If you think your knowledge did not change, circle the samenumber for both.)

6. NOW that the call has ended, how would you rate your level of knowledge about patient advisorypanels?

0 (no knowledge)

1

2

3

4

5

6

7

8

9

10 (a great deal of knowledge)

6

7. Think back to how you felt BEFORE the call and rate your level of knowledge about patient advisorypanels.

0 (no knowledge)

1

2

3

4

5

6

7

8

9

10 (a great deal of knowledge)

If you feel your knowledge level did not change, select the same number from above.

7


StronglyDisagree Disagree Neutral Agree

StronglyAgree

I can define patient advisorypanels.

I can describe the benefits ofpatient advisory panels.

I can provide examples ofhow patient advisory panelscan be used in pediatricpractices

8. Please rate the extent to which you feel you can do the following as a result of thiscall:

8

Part Three: Content and Faculty Evaluation



StronglyAgree

Information presented wasapplicable and practical.

Format of call enhanced theaccomplishment of learningobjectives.

Presentation materials helpedto meet my learning needs.

Content provided via the callwill assist me in improving myprofessional effectiveness.

Instructions for how to accessthe call were clear andstraightforward.

The audio quality of the callwas acceptable.

9. Please rate the call on the following:

9



StronglyAgree

Faculty team presentedcontent that was relevant tothe call topics and objectives.

Faculty team responded toaudience needs during thecall.

Faculty teams' knowledgeand expertise wereappropriate for this call.

Faculty team presentedcontent in an engagingmanner.

10. Faculty Team Feedback: Warren Newton, MD; Mark Gwynne, MD; and DonnaParker, MPH.

10


Quality Improvement

11. As a result of participating in this monthly webinar/call, I learned about one or more ideas/changes totest in my practice regarding family-centered care.

Strongly agree

Agree

Neutral

Disagree

Strongly disagree

12. As a result of participating in this monthly webinar/call, in the next week I will test at least one idea(strategy, resource and/or tool) using the PDSA (rapid) cycle method.

Strongly agree

Agree

Neutral

Disagree

Strongly disagree

11


13. Please describe what idea/change you will test

12


14. How would you rate the call overall?

Poor

Fair

Neutral

Good

Excellent

15. Do you have any additional comments or questions?

13

Family Engagement Quality Improvement Project Parent/Caregiver Core Improvement Team Member “Position Description”

Parent/caregiver partners are essential to enhancing family-centered care, family engagement and

improving services and client experience in the office

Parent/caregiver partners should have knowledge and experience in caring for children

Parent/caregiver partners will work with the other core improvement team members to identify skills, expertise, and current practices as they relate to family-centered care and family engagement

The following are suggested specific parent/caregiver partner activities as members of the core improvement team:

o Provide guidance, support, and feedback to the practice team from the family perspective. o Work with your practice team to make appropriate changes in the structure of how care is

monitored and delivered to patients and families. o Share results and progress about the project with other parents/caregivers in the practice. o Share results and progress with other parent/caregiver partners involved in the Family

Engagement Quality Improvement Project. o Participate in a 60-minute orientation conference call on April 27, 2016 or April 28, 2016 at

Noon Eastern and complete necessary pre-work with the practice team. o Attend a 1.5-day Learning Session on June 3-4, 2016, at or near the AAP Headquarters in Elk

Grove Village, IL (all travel expenses will be reimbursed). o Attend a 1.5-day workshop (Learning Session 2) in January 2017 (date is tentative) at or near

the AAP Headquarters in Elk Grove Village, IL (all travel expenses will be reimbursed). o Optional: Participate a telephone evaluation interview at the end of the project, discussing

your experiences with participating in, and satisfaction with, the project.

Family Engagement Quality Improvement Project: Interview Script Page 1

Participant ID______________________


Post-Implementation Telephone Interview Script

(For Parent/Caregiver Partners Participating Individually on Interviews)

Thank you for agreeing to participate in the Family Engagement Quality Improvement Project

Interview. The purpose of this call is to learn about your experiences as participant(s) in the

project. Your feedback will be used to help us make improvements to our family engagement

initiatives and resources in the future.

I will be asking you a set of questions about your experiences during the project. There are no

right or wrong answers—your truthful responses are what count. The interview will take no

more than one hour to complete. You may choose to skip one or more questions or stop the

interview at any time.

The interview will be recorded while I take detailed notes about what was said during our

conversation. Everything you say is confidential. Your individual name(s) will not appear

anywhere on any publications resulting from this interview.

Do you have any questions or concerns before we get started? OK, I am going to start the

recording.

1. How long (how many weeks/months) did you participate as a member of the pediatric

practice quality improvement (QI) team (for clarification, the QI team includes the

pediatrician, nurse/non-pediatrician clinical staff, administrative/front desk staff)?

2. Did you meet in-person with the pediatric practice QI team?

[PROBE IF YES:] How often did you meet in-person with the pediatric practice QI

team?

3. Besides in-person meetings, how did you communicate with the pediatric practice QI

team (phone, email, skype, or other methods)?

[PROBE:] How frequently did you communicate with the pediatric practice QI team?

[PROBE:] What were some of the challenges involved with communicating with the

pediatric practice QI team?

4. Tell us about your experiences participating as a member of the pediatric practice QI

team.


5. What kinds of challenges did you encounter throughout this project in your role as a

parent/caregiver partner?

6. What do you feel was your greatest success as a parent/caregiver partner throughout this

project?

7. How did the training at the learning session prepare you to participate as a member of the


[PROBE:] What other topics would have been helpful for you to receive training on?

[PROBE:] What type of training did you find most valuable/informative (for example:

orientation call, in-person learning session, monthly educational calls with the practice

team)?

8. Do you feel you gained any new skills as a result of your experience?

[PROBE IF YES:] What are some new skills that you gained as a result of this

experience?

[PROBE IF NO:] What do you think prevented you from gaining new skills during this

experience?

9. In what ways did the project affect the patient-provider experience/relationship at your

practice? [PROBE IF NECESSARY]: the “patient-provider” experience refers to the

relationship between a patient, a family, and a pediatric clinician. Do you feel that this

project changed this relationship in any way?

[PROBE IF NO CHANGE:] Why do you think this project didn’t impact/affect the

patient-provider experience in your practice?

10. What would you say was the most valuable thing you learned from your experience as a

member of the pediatric practice QI team?

11. Overall, how much support did you get from the QI team regarding your needs as a

parent/caregiver?

12. What recommendations would you give to health care professionals who are planning to

include parents/caregivers on their QI teams in the future?

13. What recommendations would you give to parents/caregivers who are planning to

participate as members on pediatric practice QI teams in the future?


14. If we were to do this project again, what changes would you recommend to make it more

useful and meaningful to pediatric practices and families? Please be as specific as

possible.

15. Is there anything else you’d like to share about your experiences working on this project?

Thank you for your time and for your participation in the Family Engagement Quality

Improvement Project.


Participant ID______________________


Post-Implementation Telephone Interview Script (Practice Teams)


Interview. The purpose of this call is to learn about your experiences as participants in the



I will be asking you a set of questions about your learning experiences during the project and

your use of the project resources. There are no right or wrong answers—your truthful responses

are what count. The interview will take no more than one hour to complete. You may choose to

skip one or more questions or stop the interview at any time.


conversation. Everything you say is confidential. Your practice and individual name(s) will not

appear anywhere on any publications resulting from this interview.


recording.

First, I’d like to ask you some questions about your experiences with learning about family

engagement. For this project, we define family engagement as an innovative approach to the

planning, delivery, and evaluation of health care that is grounded in mutually beneficial

partnerships among health care providers, patients, and families.

1. How well would you say this project helped you understand the key concepts and

practices related to family engagement, such as shared decision-making and connecting

families to resources?

[PROBE: IF WELL:] In what ways would you say the project helped you understand the

key concepts?

[PROBE: IF NOT VERY WELL:] What could the project have done to help you

understand these key concepts better?

2. Did the project affect the patient-provider connection at your practice?

[PROBE IF YES:] Tell me more about how this project affected the patient-provider

connection in your practice.

[PROBE IF NO:] Why do you think this project didn’t impact/affect the patient-provider

connection in your practice?


Now I’d like to find out more about your experiences with learning how to make improvements at

your practice.

3. This project used a framework for improving healthcare processes and outcomes called

The Model for Improvement. The Model for Improvement uses a series of steps, called

the Plan, Do, Study, Act (or PDSA) Cycle to make small changes and to test whether the

changes resulted in an improvement. How well would you say this project helped you

learn to use the key concepts and tools related the Model for Improvement, such as

testing changes and PDSA cycles?

4. For the next few questions, I’d like you to take a moment to pick one of the changes your

team worked on [PAUSE]. In relation to the change you have in mind, please tell me

about your experiences with the following:

a. Please explain the change your team worked on that you would like to discuss.

b. How did you come up with the idea to make this particular change?

c. How confident were you that making this change would result in an

improvement?

d. How successful would you say you were in making this change?

e. How did you know whether the change was successful or not?

f. Based on your experience, what would you say worked and didn’t work when you

tested this change?

g. Did you encounter any challenges when testing this change? How did you deal

with the challenges?

5. Overall, how well were you able to successfully track your improvements over the course

of the project? Was this a challenge?

6. If you made any changes within your practice as a result of this project, do you have a

plan for sustaining them? If so, what is it?

Now I’d like to ask you about your experiences with using the project resources.

7. This project included a variety of offerings to help participants with their improvement

efforts related to family engagement, including monthly educational webinars and calls,

one-on-one quality improvement coaching calls, a listserv, a project workspace, and

monthly email updates. I am going to ask you about each one separately and ask you to


tell me how helpful it was using the following answer choices: 1) not at all helpful, 2) not

very helpful, 3) helpful, and 4) very helpful.

a. First, I’d like ask about the monthly educational webinars and calls.

i. How helpful were the educational webinars and calls to you in learning

about family engagement, would you say: 1) not at all helpful, 2) not very

helpful, 3) helpful, or 4) very helpful? Tell me more about your answer.

ii. How helpful were the monthly educational webinars and calls to you in

learning about making improvements, would you say: 1) not at all helpful,

2) not very helpful, 3) helpful, or 4) very helpful? Tell me more about

your answer.

iii. Do you have any suggestions for how we could improve them?

b. Next, I’d like to ask about the one-on-one quality improvement coaching calls

with the project Quality Improvement Advisor and staff.

i. Did you participate in a one-on-one call?

[IF NO, SKIP TO C]

[IF YES]

ii. How helpful was the one-on-one call to you in learning about family

engagement, would you say: 1) not at all helpful, 2) not very helpful,

3) helpful, or 4) very helpful? Tell me more about your answer.

iii. How helpful was the one-on-one call to you in learning about making

improvements, would you say: 1) not at all helpful, 2) not very helpful,


iv. Do you have any suggestions for how we could improve them?

c. Each month, the project staff sent out a monthly email update that included a

note from the QI advisor and highlighted resources to assist teams with testing

changes.

i. How helpful were the monthly email updates to you in learning about

family engagement, would you say: 1) not at all helpful, 2) not very


ii. How helpful were the monthly email updates to you in learning about

making improvements, would you say: 1) not at all helpful, 2) not very




iv. Is there anything the project staff can do in the future to make the

information in the monthly email updates easier to access?

d. Next I’d like to ask about the project workspace (available through QIDA).

i. How helpful was the listserv to you in learning about family engagement,

would you say: 1) not at all helpful, 2) not very helpful, 3) helpful, or 4)

very helpful? Tell me more about your answer.

ii. How helpful was the listserv to you in learning about making



iii. Do you have any suggestions for how we could improve it?

e. Which of the project resources that we just discussed: educational webinars and

calls, one-on-on calls, monthly email updates, and project listserv, would you say

were most helpful or useful to your team?

8. During this project, did you get any good ideas or inspirations from the other teams? If

so, what were they? Please be as specific as possible.

a. [PROBE IF YES] Where did the best ideas come from? Was it the face-to face

meeting, phone calls, or listserv?

9. What is the most valuable thing about family engagement that you/your team will take

away from this project? Please be as specific as possible.

10. What is the most valuable thing about quality improvement methodology that you/your

team will take away from this project? Please be as specific as possible.



possible.

12. Finally, is there anything else you’d like to tell me about your experiences with this

project?



1

Family Engagement Quality Improvement Project Phone Interview



We request your participation in a project titled Family Engagement Quality Improvement Project Phone

Interview. This project is an optional component of the Family Engagement Quality Improvement

Project, facilitated by the National Center for Medical Home Implementation in the American Academy

of Pediatrics (AAP), funded through a cooperative agreement between the AAP and the Maternal and

Child Health Bureau of the Health Resources and Services Administration. In anticipation of the

conclusion of the Family Engagement Quality Improvement Project in winter 2017, AAP staff and Expert

Work Group members would like feedback from parent/caregiver partners about their experiences

participating in this project.


The primary goal of the Family Engagement Quality Improvement Project Phone Interview is to offer

further insight into parent/caregiver partner experiences participating as members of core improvement

teams.

HOW WE SELECTED YOU

You were selected to participate in phone interviews because you served as a parent/caregiver partner on

a core improvement team throughout the Family Engagement Quality Improvement Project.


As a participant of the Family Engagement Quality Improvement Project Phone Interview, you will be

asked to:

Review a list of questions developed jointly by project staff, Expert Work Group members,

and an evaluation consultant in advance of the interview.

Work with project staff and evaluation consultant to schedule a 60-minute phone interview

with the evaluation consultant.

Participate in a 60-minute phone interview with the project’s evaluation consultant. You will

have the option to participate in the phone interview individually, or with other members of

your core improvement team (pediatrician, nurse, administrative staff).

During the phone interview, share experiences related to participation in the project,

including any successes, challenges, and new skills gained throughout the project.

PROJECT DURATION

The phone interviews will be completed in January and February 2017. Phone interviews will be 60

minutes in length.


The phone interviews will be recorded and the evaluation consultant will be taking notes. The original

notes will contain the practice name and phone interview participant names. These notes will only be

2

accessible by the project’s evaluation consultant and will not be shared with project staff, Expert Work

Group members, or any other individuals who were not present on the call/phone interview. All phone

interview recordings and notes will be destroyed upon the completion of the project.

Qualitative data acquired during phone interviews will be accessible to project staff, Expert Work Group

members, quality improvement advisor, and the evaluation consultant. Qualitative data will also be

included in the final report submitted to the project funder (the Maternal and Child Health Bureau, Health

Resources and Services Administration) and in summary format to practice teams and Expert Work

Group members. All participant names and practices names will be excluded from this report.

During the phone interviews, some nervous feelings or psychological discomfort may occur. Interview

questions will be shared with each participant beforehand to minimize discomfort and aide in

preparedness. Participants can choose to skip and/or not answer any questions throughout the interview.

Although there may be uncommon or previously risks that might occur, we do not expect these to be

significant.




section below.)




By participating in the phone interview, participants will have an opportunity to share their lessons

learned and to showcase their hard work, determination, and successes related to the project. This

information can be used to help improve future family engagement projects at the AAP.

COMPENSATION


CONFIDENTIALITY


members, quality improvement advisor, and the evaluation consultant. The qualitative data may also be

included in a final report submitted to the project funder (the Maternal and Child Health Bureau, Health

Resources and Services Administration). All participant names and practice names will be excluded from this

report.

VOLUNTARINESS

Your participation in the project is completely voluntary/optional. You may refuse to participate, or you

may stop participating at any time and for any reason, without any penalty or impact.

WHOM TO CONTACT

3

If you have any questions about the project, please contact Alex Kuznetsov, Program Manager (contact

information below). If you have any questions or concerns about your rights as a research subject, please

contact Erin Kelly, AAP Institutional Review Board Administrator at 847/434-4075.


I have read this statement, and I understand what it says. I agree to participate in this project under the

conditions outlined above. I acknowledge that I have received a copy of this form.

Participant

Signature ______________________________________ Date _____________________

Printed Name _______________________________________

Practice Name _______________________________________

If you choose to participate in this project, please sign, scan and e-mail to:

Alex Kuznetsov

Program Manager


Phone: 847/434-7087


Beth Evans




Fax: 847/228-5034

Consent forms must be received no later than January 3, 2017.



Alex Kuznetsov

Program Manager


Phone: 847/434-7087




Eligibility to Participate Notification Email

(To be sent to each member of the core improvement team)

Dear Applicant,

I am pleased to inform you that you and your practice have been selected to participate in

the Family Engagement Quality Improvement Project, a project of the National Center

for Medical Home Implementation in the American Academy of Pediatrics. We look

forward to working with you!

Attached is a consent form for participation in the project. Please complete it and return it

via email to [email protected] or fax to 847/228-5034 by May 2, 2016.

Project orientation sessions have been scheduled for April 27, 2016, and April 28, 2016,

at Noon Eastern. Your team is required to attend one of these sessions. The session will

provide you with an overview of the project, expectations for involvement, and answer

any questions you may have about participation.

Should you have any questions or concerns at any time, please contact me via email at

[email protected] or by phone at 847/434-7087

Thank you.

Alex Kuznetsov Program Manager National Center for Medical Home Implementation American Academy of Pediatrics Email: [email protected]

Tel: 847/434-7087 www.medicalhomeinfo.org

www.pediatricmedhome.org




http://www.medicalhomeinfo.org/

http://www.pediatricmedhome.org/


Notification Email for Those Who Were Not Selected

Dear Applicant,

Thank you for applying to participate in the Family Engagement Quality Improvement

Project, a project of the National Center for Medical Home Implementation in the

American Academy of Pediatrics.

The response was overwhelming and we regret to inform you that you have not been

selected for participation in the quality improvement project. We greatly appreciate your

interest and would welcome your involvement in future projects.

The National Center for Medical Home Implementation in the American Academy of Pediatrics proudly present this

Certificate of Participation and Practice Improvement to

NAME OF PRACTICE

for outstanding contributions to the


A project with the mission of improving family engagement in practice through shared decision making and connection of families to appropriate supports and services.

Megan M Tschudy, MD, MPH, FAAP Project Leader

Michelle Z Esquivel, MPH Director, National Center for Medical Home Implementation

Director, AAP Division of Children with Special Needs


A project of the National Center for Medical Home Implementation, a cooperative agreement between the American Academy of Pediatrics and

the Maternal and Child Health Bureau of the Health Resources and Services Administration

Project Aim:

By January 2017, 10 pediatric primary care practice teams will work individually and collaboratively to test, implement, disseminate, and plan to

sustain strategies to improve family engagement in clinical practice through enhanced shared decision-making and connection of families to

appropriate supports and services. Participating pediatric primary care practices will make improvements so that:

Measure Name/Type

Measure Definition Source of Measure

Measure Calculation

Measure Exclusion

Data Source/ Associated Collection tool

Measure Benchmark

Measure Target/ Goal

Data Collection Plan

Associated Questions

Elicit patient/ family concerns

Percent of patients for whom patient/family concerns were elicited at the most recent health supervision visit.

Bright Futures

Target Population: All patients 0 – 18 years of age who received a health supervision visits Numerator: Total number of patients/families whose individual and family concerns are elicited during a visit Denominator: Total number of medical records in a record set

Patients over 18 years of age; patients seen for acute care visits

Medical record review/Record review tool

N/A 80% Volume: 10 records Frequency: Monthly Transmission: QIDA

Is there documentation in the medical record indicating that patient/family concerns were elicited at the most recent health supervision visit?

Address patient/ family concerns

Percent of patients for whom a plan was created to address patient/family concerns at the most recent health supervision visit.

1. Bright Futures 2. Florida CHIPRA Project, Round 2

Target Population: All patients 0 – 18 years of age who received a health supervision visit Numerator: Total number of patients/families for whom a plan was created to address patient/family concerns Denominator: Total number of medical records for those patients for whom families/caregivers had identified concerns.

Patients over 18 years of age; medical records without identified family/caregiver concerns



Is there documentation in the medical record indicating a plan was created to address patient/family concerns at the most recent health supervision visit?

Identify and discuss family strengths

Percent of patients for whom family strengths were identified and discussed at the most recent health supervision visit.

Bright Futures

Target Population: All patients 0-18 years of age who received a health supervision visit Numerator: Total number of patients whose family strengths

Patients over 18 years of age; patients who were seen for an acute care visit



Is there documentation in the medical record indicating that family strengths were identified and discussed during the

were identified and discussed during a visit. Denominator: Total number of medical records in a medical record set.

most recent health supervision visit?

Medical summary (post-visit summary) or care plan created

Percent of patients who have a medical summary (post-visit summary) or a comprehensive care plan created or updated/maintained at a visit.

Florida CHIPRA Project, Round 2

Target Population: All patients 0 – 18 years of age who received a supervision visit Numerator: Total number of patients who have a medical summary or comprehensive care plan created or updated/maintained at this visit Denominator: Total number of medical records in a medical record set

Patients over 18 years of age


N/A 80% Volume: 10 medical records Frequency: Monthly Transmission: QIDA

Is there documentation in the medical record indicating that a medical summary or comprehensive care plan that was created or updated/maintained during a visit?

Medical summary or care plan reviewed

Percent of patients who have a current copy of their medical summary (post-visit summary)

Florida CHIPRA Project, Round 2

Target Population: All patients 0 – 18 years of age who received a

Exclude charts with a “No” answer to medical


N/A 80% Volume: 10 records Frequency: Monthly

Is there documentation in the medical record indicating that

and offered to patient

or comprehensive care plan reviewed through an active form of family engagement, such as, but not limited to:



Ask-me-3 and offered to patients/families at the visit.

health supervision visit Numerator: Total number of patients who have a current copy of their medical summary or comprehensive care plan reviewed and offered to them at this visit Denominator: Total number of medical records in a record set with a medical summary or comprehensive care plan created

summary created measure.

Transmission: QIDA

a medical summary or a comprehensive care plan was reviewed and offered to the patient and family during an office visit?

Communica-tion of age-appropriate screening results with patients/ families

Percent of patients whose family received a follow-up discussion of age-appropriate screening results on the same day as the screening.

Adapted from the Don’t Just Wait and See: Improving Developmental Screening and Follow-

Target Population: All patients 0-18 years of age who received a health supervision visit Numerator: Number of patients with documentation in chart of family

Patients over 0-18 years of age; patients seen for acute care visits



Is there documentation that age-appropriate screening results were discussed with the family on the same day as the visit in

up QI Project

receiving a discussion of age-appropriate screening results on the same day as the screening visit. Denominator: Total number of medical records in a record set.

the medical record?

Families feel that they can be honest with the child’s providers/clinicians about the choices they make for their child

Percent of families who indicated that they felt they can be honest with their child’s doctors and nurses about the choices they make for their child

Adapted from CG CAHPs Cultural Competence Question set, with guidance from a plain language communication consultant

Target Population: Families of all patients 0-18 years of age who received a health supervision visit Numerator: Number of families reporting “Yes” to survey question. Denominator: Total number of surveys received

Families of patients over 18 years of age; families of patients who were seen for an acute care visit

Post-visit family survey /post visit family survey data entry tool

N/A 80% Volume: 10 surveys Frequency:Monthly Transmision: QIDA

Did you feel like you could be honest with your child’s doctors and nurses about the choices you make for your child?

1. Yes 2. No

Provider/Clinician explained things about the child’s health in a way that was easy for

Percent of families who indicated that the people providing medical care to their child explained things about their child’s health in a way that

Adapted from CG CAHPS Children’s PCMH Question Set, with guidance

Target Population: Families of all patients 0-18 years of age who received health supervision visit

Families of patients over 18 years of age; families of patients who were seen for an



During today’s visit, did the people providing medical care to your child explain things about your

the family to understand

was easy to understand.

from a plain language communication consultant

Numerator: Number of families reporting “Yes” to survey question. Denominator: Total number of surveys received

acute care visit

child’s health in a way that was easy to understand?

1. Yes 2. No

Provider/clinician listens to what the family has to say

Percent of families who indicated that doctors and nurses listened to what they had to say.

Adapted from CG CAHPs PCMH Children’s question set, altered with guidance from a plain language communication consultant

Target Population: Families of all patients 0-18 years of age who received health supervision visit Numerator: Number of families reporting “Yes” to survey question. Denominator: Total number of surveys received




Did our doctors and nurses listen to what you and your family had to say?

1. Yes 2. No

Provider/clinician gave thoughtful responses to family questions and concerns

Percent of families who indicated that doctors and nurses gave thoughtful responses to their questions and concerns.

Adapted from CG CAHPs PCMH Children’s question set, altered with guidance from a plain language

Target Population: Families of all patients 0-18 years of age who received health supervision visit Numerator: Number of families reporting




Did our doctors and nurses give thoughtful responses to your questions and concerns?

1. Yes 2. No

communication consultant

“Yes” to survey question. Denominator: Total number of surveys received

Receptionists and clinic staff treated the family with dignity and respect

Percent of families who indicated that receptions and other clinic staff treated them with dignity and respect.

Adapted from CG CAHPS Children’s PCMH Question Set, with guidance from a plain language communication consultant

Target Population: Families of all patients 0-18 years of age who received health supervision visit Numerator: Number of families reporting “Yes” to survey question. Denominator: Total number of surveys received




Did our receptionists and other clinic staff treat you and your family with respect?

1. Yes 2. No

Provider/clinician involved family in decisions about child’s health

Percent of families who indicated doctors and nurses involved them in decisions about their child’s health.

Adapted from the Communication Climate Assessment Toolkit , with guidance from a plain language communicat

Target Population: Families of all patients 0-18 years of age who received health supervision visit Numerator: Number of families reporting




Did our doctors and nurses involve you and your family in decisions about your child's health?

1. Yes 2. No

ion consultant

“Yes” to survey question. Denominator: Total number of surveys received

Communica-tion with patients and families (Balancing Measure)

Percent of practices that indicated participation in the Family Engagement Quality Improvement Project made communication with patients and families easier.

Florida CHIPRA Project Round 2

At the end of each Action Period, each practice team will complete a survey on a scale of 1-5 (1= much more difficult, 5= much easier). This will measure % of practices who answered 4-5.

Monthly Progress Reports

N/A 80% Volume: 1 report Frequency: Monthly Transmission: QIDA/Survey Monkey

Think about the changes your team has implemented as part of the “Family Engagement Quality Improvement Project.” Because of this project, the amount of time it takes staff and physicians to communicate with patients and families has taken: 1. Much more

time 2. More time 3. Remained

the same 4. Less time

5. Much less time

Health care team experience (Balancing Measure)

Percent of practices that indicated participation in the Family Engagement Quality Improvement Project made the experience of providing care for patients easier for the health care team.

At the end of each Action Period, each practice team will complete a survey on a scale of 1-5 (1= much more difficult, 5= much easier). This will measure % of practices who answered 4-5.

N/A Monthly Progress reports

N/A 80% Volume: 1 report Frequency: Monthly Transmission: QIDA/Survey Monkey

Think about the changes your team has implemented as part of the “Family Engagement Quality Improvement Project.” Because of this project, the care team’s confidence about engaging families in shared decision-making has become: 1. Much less

confident 2. Less

confident 3. Remained

the same

4. More confident

5. Much more confident


Resource List of Project Tools

Shared Decision-Making

Fostering Partnership and Teamwork in the Pediatric Medical Home: A “How -To” Video Serieso Care Partnership Supporto Family Advisory Groupso View the corresponding webinar series, which features real-life examples of practices that

are implementing each of these strategies on a daily basis.

Achieving a Shared Plan of Care with Children and Youth with Special Health Care Needso Features template care plans and an implementation guide on how to create a plan of

care in true partnership with families and children; emphasizes strategies for shareddecision-making

Family Voices: Tips for Partnering with Your Child’s Providero This handout is specifically for families, but clinicians can keep copies in their office to

hand out to families.

Decision Aids, Cincinnati Children’s Hospitalo Evidence-based tools that help families, patients, and clinicians make shared decisions

about plans of care for children with complex conditions. These are health conditionspecific, including ADHD treatment, anticoagulation therapy, bone infection, diarrhea,HPV vaccination, Autism, among others.

Powerful Partnerships: A Handbook for Families and Providers Working Together to Improve Careo Strategies to involve families as equal members of multidisciplinary care teams.

Health Promotion

Pre-visit Questionnaires, Medical Home Practice Brochures, Child and Adolescent Health Assessment Forms, Post-visit Family/Caregiver Survey (all available under the Family-CenteredCare section of the “Building Your Medical Home” online resource guide ).

o These allow families to express their priorities and goals related to their child’s care,ensuring that each doctor’s visit focuses on the most pressing issues (both health andnon-health related) for families.

Well-Visit Plannero Same idea as above, except these resources are specifically to help families pre pare for

well-child visits (so it is age specific).

Building Your Care Notebooko Downloadable and customizable forms that help families/caregivers to organize their

child’s care, includes tracking forms for clinicians, specialists, insurance, community resources, school information, among others.

Family Support

Parent Partners: Creative Forces on Medical Home Improvement Teamso Strategies/resources for practices looking to have a parent partner employed at their

practice. This is slightly outdated, but still a good resource. Written by a parent partner.

Family-to-Family Health Information Centers

o Each state has one; all are staffed by families/caregivers of children with special health

care needs and provide peer support to families/caregivers. Although not necessarily atool, these centers are always good for clinicians to know about and refer families to.

http://medicalhomeinfo.org/how/resources/videoseries.aspx

http://www.medicalhomeinfo.org/training/cme/2014.aspx

http://lpfch-cshcn.org/publications/research-reports/achieving-a-shared-plan-of-care-with-children-and-youth-with-special-health-care-needs/

http://www.familyvoices.org/admin/work_caring/files/partnering_providers.pdf

http://www.cincinnatichildrens.org/service/j/anderson-center/evidence-based-care/decision-aids/

http://www.nichq.org/how-we-improve/resources/powerful-partnerships

https://medicalhomes.aap.org/Pages/Providing-Family-Centered-Care.aspx

https://medicalhomes.aap.org/Pages/Providing-Family-Centered-Care.aspx

http://www.wellvisitplanner.org/

http://medicalhomeinfo.org/for_families/care_notebook/care_notebook.aspx

http://www.medicalhomeimprovement.org/pdf/CMHI-Parent-Partner-Guide.pdf

http://www.fv-ncfpp.org/f2fhic/find-a-f2f-hic/


Instructions for Participation

Congratulations on being selected to participate in the Family Engagement Quality Improvement Project,

an initiative of the National Center for Medical Home Implementation (NCMHI). The NCMHI is a

cooperative agreement between the American Academy of Pediatrics and the Maternal and Child Health

Bureau of the Health Resources and Services administration.

The following information provides instructions for participation in the project, including important

dates and procedures. Please include these dates on your calendar.

Item Due Date Procedure Send To

Pre-work/Pre-Learning Session

Orientation webinar April 27, 2016, 11 am – Noon Central/Noon – 1 pm Eastern OR April 28, 2016, 11 am- Noon Central/Noon – 1 pm Eastern

All participants are required to join one webinar.

Registration Link: April 27, 2016, Noon – 1 pm Eastern

Registration Link: April 28, 2016, Noon – 1 pm Eastern

Complete pre-work assignment by viewing this video on the Model for Improvement.

N/A

Register for QIDA Project Workspace

April 28, 2016 Practice teams will receive a QIDA User Manual with instructions on how to register and use QIDA. An overview of the QIDA will be provided during the orientation webinar.

N/A

RSVP for Learning Session

April 29, 2016 Submit an RSVP form for each team member attending the in-person learning session

Beth Evans, [email protected].

Consent Form May 2, 2016 All practice team members except for parent/caregiver partners must sign and return a form before entering any baseline data.

Alex Kuznetsov, [email protected] OR Fax form to: 847/228-5034

Book travel for in-person learning session

May 9, 2016 Book flights for the in-person learning session using the AAP Concur system.

Contact Beth Evans, [email protected] or 847/4343-7605 with questions.

Pre-implementation survey

May 13, 2016 Each practice team should complete one survey

Completed via Survey Monkey, accessed through QIDA

https://cc.readytalk.com/cc/s/registrations/new?cid=tdm0jc5t1riz



https://cc.readytalk.com/cc/s/registrations/new?cid=1ily1bwn8vov



https://youtu.be/BKEMTW3yvuM




Baseline medical record review

May 13, 2016 Review medical records for the first 20 patients age 0 – 18 years seen in the practice for health supervision visits using the medical record review tool in the QIDA. Refer to the medical record review tip sheet for questions/details.

Data entered into the QIDA

Post-visit family survey review

May 13, 2016 Collect surveys from the first 10 families of patients age 0-18 years seen in the practice for health supervision visits.


Learning Session

Learning Session June 3 – 4, 2016 Hyatt Rosemont Rosemont, Illinois

All practice teams are required to attend the in-person learning session at the Hyatt in Rosemont, Illinois (right next to O’Hare International Airport).

June 3, 2016, 1:30 – 7:00 pm

June 4, 2016, 7:30 am – 1:30 pm

N/A

Action Period/Post Learning Session

Monthly medical record review

Due on the 30th of each month:

July 30, 2016

August 30, 2016

September 30, 2016

October 30, 2016

November 30, 2016

December 30, 2016

Review medical records for the first 10 patients age 0 – 18 years seen in the practice for a health supervision visit.


Monthly post-visit survey collection


July 30, 2016

August 30, 2016

September 30, 2016

October 30, 2016

November 30, 2016

December 30, 2016

Collect surveys from the first 10 families with patients age 0 – 18 years seen in the practice for health supervision visits. Surveys must be collected using an anonymous survey box.


Monthly Educational Webinars/Conference Calls

All webinars/conference calls are held on Tuesdays, from Noon – 1 pm Central time/ 1- 2 pm Eastern.

July 19, 2016

August 30, 2016

September 20, 2016

October 28, 2016

November 29, 2016

December 20, 2016

All practice teams are encouraged to participate in monthly educational webinars.

Webinars/calls include educational sessions on topics related to family-engagement.

Teams should be prepared to provide information on lessons

N/A

learned, challenges, and tests of change implemented each month.

Monthly Progress Reports


July 30, 2016

August 30, 2016

September 30, 2016

October 30, 2016

November 30, 2016

December 30, 2016

Each practice team is required to complete one monthly progress report via Survey Monkey link accessed through QIDA.

Completed via Survey Monkey, accessed through QIDA.

Quality Improvement Coaching Calls

Scheduled based on availability of each practice team.

Each practice team is required to participate on at least two quality improvement coaching calls with the project’s quality improvement advisor, Ruth Gubernick.

Alex Kuznetsov ([email protected]) will assist in scheduling these calls.

Post-Action Period/Evaluation

Post-implementation survey

January 30, 2017 Each practice team is required to complete one post-implementation survey via Survey Monkey accessed through QIDA.

Completed via Survey Monkey, accessed through QIDA.

Qualitative Phone Interviews (OPTIONAL)

Scheduled based on availability of practice teams

Practice teams have the option to participate in qualitative interviews upon the completion of the project to provide feedback on their experience participating in the project. Parent/caregiver partners may also choose to participate in these calls, individually or with the practice team.

Alex Kuznetsov ([email protected]) will assist in scheduling these calls.

Learning Session 2 January 2017 A second in-person learning session Is tentatively scheduled for January 2017.

N/A



GETTING STARTED

1. Orientation Webinar

Join a webinar to discuss the project’s aim, measures, quality improvement methodology, and

necessary pre-work (baseline data collection). The webinar will be offered at two separate

times, April 27, 2016 11 am - Noon Central or April 28, 2016, 11 am- Noon Central. Please

register using the following links:

o Registration Link: April 27, 2016, Noon – 1 pm Eastern

o Registration Link: April 28, 2016, Noon – 1 pm Eastern

Prior to participating on the orientation webinar, completed the required assignment by viewing

this recording on the Model for Improvement.

2. Consent Form

Participating pediatricians, nursing and/or non-pediatrician clinical staff, and

administrative/front desk staff are required to complete a consent form before beginning data

collection. Please do this as soon as possible and submit a signed form no later than May 2,

2016, to Alex Kuznetsov ([email protected]) or fax the form to 847/228-5034.

3. Obtain IRB Approval (If required from your institution)

If your institution requires it, you must obtain local Institutional Review Board (IRB) approval

prior to submitting any data for this project. If you would like a copy of the AAP IRB application

and approval letter, contact Alex Kuznetsov ([email protected]). Teams cannot complete any

pre-work/data collection if IRB approval is not obtained.

4. Register and Log in to the Quality Improvement Data Aggregator (QIDA)

The QIDA will serve as the project’s main data collection tool and also contains important

project information and resources. Detailed instructions on how to register for and use the QIDA

will be emailed separately to participants. Log in to QIDA by following this link.

5. Air Travel and Lodging for Learning Session

Work with the AAP Travel Office and Beth Evans, Division Coordinator for the AAP Division of

Children with Special Needs, to ensure that your flights and hotel reservations are booked in

time to participate in the Learning Session June 3-4, 2016. Contact Beth Evans at

[email protected] for information about booking flights and hotel reservations. All flights must

be booked by May 9, 2016.

6. Baseline Data Collection

After signing the consent form, begin collecting baseline data by following the steps below:

Complete a pre-implementation survey (one per team) by May 13, 2016. This survey is

accessible via the Quality Improvement Data Aggregator (QIDA), a web-based data

collection and aggregation tool that will be used throughout this project.

Review medical records of the first 20 patients age 0-18 years seen in the practice for

health supervision visits; enter review data into the QIDA using the “Medical Record

Review Tool.” PDF versions of this tool, as well as an accompany tip sheet, will be

provided to practice teams for reference.



https://youtu.be/BKEMTW3yvuM



http://qidata.aap.org/familyengagement/welcome?sso=true&nfstatus=401&nftoken=00000000-0000-0000-0000-000000000000&nfstatusdescription=ERROR%3a+No+local+token


http://qidata.aap.org/familyengagement/welcome?sso=true&nfstatus=401&nftoken=00000000-0000-0000-0000-000000000000&nfstatusdescription=ERROR%3a+No+local+token

http://qidata.aap.org/familyengagement

Collect 10 surveys from families of patients age 0-18 years seen in the practice for

health supervision visits. Enter survey responses using the “Post-visit Family Survey Data

Collection Tool” in the QIDA.

o Surveys can be collected from families of patients seen in the practice by any

provider, not just those on the core improvement team for this project. This

project is designed to facilitated practice-wide change, and as such surveys

should reflect the experience of all families seen in the practice.

o Surveys must be submitted anonymously by family members. To protect family

confidentiality, practices will be asked to create a box for families to drop off

surveys and keep the box in their waiting room (or another central location in

the practice). Family members who complete the surveys will be asked to leave

completed surveys into this box. Surveys can be downloaded and printed by

practices from the QIDA project workspace. Surveys are available in English and

Spanish. Detailed instructions on how to collect these surveys will be provided

during the orientation webinar.

DETAILED INSTRUCTIONS

Once the AAP consent form is signed and returned, practice teams can begin baseline data collection. If

your institution/practice requires local IRB, you cannot submit any data until you receive local IRB

approval.

Pre-Implementation Survey

Deadline to complete survey: May 13, 2016

This project will utilize the Quality Improvement Data Aggregator (QIDA), a web-based data collection

and aggregation tool. Practice teams will select one member of the team to serve as the group

administrator for QIDA. This individual will enter data each month. Each practice team is required to

complete one pre-implementation survey per team. A link to the survey will be posted in the QIDA

system. The pre-implementation survey is a method to assess existing systems in your practice related

to family engagement. The survey should be completed as a team.

Medical Record Review

Deadline to submit baseline data: May 13, 2016

Monthly deadlines: 30th of each Month

During the baseline data collection period, each practice team is required to review 20 medical records

for the first 20 patients age 0-18 years who come into the practice for health supervision visits. Baseline

medical record reviews will be entered into the QIDA using the “Medical Record Review Tool.” Practice

teams are encouraged to refer to the “Medical Record Review Tip Sheet” available in QIDA to assist with

conducting medical record reviews. This tip sheet provides valuable information on “What Counts” for

each question on the medical record review data collection tool. PDF versions of the Medical Record

Review Tool and accompanying Tip Sheet will be available to practice teams through the project

workspace in QIDA. Teams can choose to use hard copies of this tool and tip sheet to collect data and

then enter it into the QIDA.




Access to QIDA occurs through a registration process. AAP members will use their AAP single sign-on

username and password to access the system. Those team members who do not have AAP IDs will

create IDs using instructions emailed to them. Detailed instructions on how to register for and use the

QIDA will be provided to practice teams through a QIDA User Manual. One member of each practice

team will be designated as the group administrator and will be responsible for entering data into QIDA.

Note that parent/caregiver partners will not have access to QIDA due to IRB restrictions.

Please note that during the 6-month Action Period (after baseline data collection is completed), teams

will be required to review 10 medical records per month (not 20, as during the baseline collection

period).

Post-Visit Family Survey Collection

Deadline to submit baseline data: May 13, 2016

Monthly deadlines: 30th of each Month

Each practice team is required to collect 10 post-visit family surveys from the first 10 families who agree

to participate with patients age 0-18 years seen in the practice for health supervision visits. Surveys are

available for printing and distribution in English and Spanish in PDF form in the project workspace

accessible through the QIDA. Family members will complete surveys and place them in a box in the

practice waiting room, ensuring that surveys are kept anonymous. Family members will be instructed to

not write their name or any other identifying information on the surveys, to protect the confidentiality

of the family and patient. During each action period, the practice team’s QIDA group administrator will

enter all survey data into the QIDA post-visit family survey collection tool.

Note that surveys can be collected from families of patients seen by any/all providers in the practice, to

reflect family experience across the entire practice. This project is designed to elicit changes and

improvements at the practice level. As such, data will be collected from all families who meet the

aforementioned criteria.

In-person Learning Session

June 3, 2016, 1:30 – 7 pm Central

June 4, 2016, 7:30 am – 1:30 pm Central

Hyatt Rosemont, Rosemont Illinois (10 minutes from O’Hare International Airport)

All practice teams are required to attend the project’s in-person learning session scheduled June 3-4,

2016, in Rosemont, Illinois (right next to O’Hare International Airport). All travel and lodging expenses

will be reimbursed by the AAP. Practice teams are required to identify a parent/caregiver partner before

the learning session, and parent/caregiver partners are required to attend the learning session.

The learning session will provide participants with an overview of baseline data; strategies to test small

changes in practice focused on family engagement; and an overview of tools to assist with implementing

and sustaining changes in practice; and ample opportunities for collaborative learning.


Monthly Webinars

All webinars/conference calls are held on Tuesdays, from Noon – 1 pm Central time/ 1- 2 pm Eastern.

July 19, 2016

August 30, 2016

September 20, 2016

October 28, 2016

November 29, 2016

December 20, 2016

Each month, project staff, quality improvement advisor, and members of the project’s Expert Work

Group will facilitate a 60-minute webinar/conference call for practice teams. The first 30 minutes of the

webinar will include an educational presentation facilitated by guest faculty. The second 30 minutes of

the webinar will include a facilitated discussion on data submitted by practice teams and progress on

each of the project’s 12 measures. Practice teams will have the opportunity to share their successes and

challenges each month, hear from other teams, and share promising practices in family engagement.

Quality Improvement Coaching Calls

Scheduled based on availability of each practice team.

Throughout the project, each practice team is required to participate on at least two quality

improvement coaching calls with the project’s quality improvement advisor, Ruth Gubernick, MPH.

Teams will participate on these calls individually (only one team on the call at a time). These calls will

provide teams with an opportunity to receive tailored and unique support and guidance on how to

implement tests of change and sustain successful changes in practice. Project staff will also participate

on the calls, take notes, and follow-up on any action items that may be relevant. Project staff will assist

with scheduling these calls at a time that meets the availability of each practice team.

Post-Implementation Surveys

Deadline to complete survey: January 20 2017

After completing the project, each practice team will be required to complete one post-implementation

survey per team. This survey is similar to the pre-implementation survey completed by teams at the

beginning of the project and is designed to assess systems in practice that enhance family engagement.

Qualitative Interviews (OPTIONAL)

Date/time to be determined

Practice teams, including parent/caregiver partners, have the option to participate in qualitative

interviews with the project’s evaluation consultant Pamela Kelley, PhD. These interviews are designed to

obtain feedback on practice team experience participating in the project. Participation in interviews is

optional. Parent/caregiver partners have the option to participate in interviews with the practice teams,

or hold their own interviews with Dr Kelley based on their preferences.

In-person Learning Session 2 (Tentative)

January 2017

A second in-person learning session may be held in January 2017. Further details on this will be provided

in Fall 2016.

PROJECT STAFF CONTACT INFORMATION

Alex Kuznetsov, RD

Program Manager

National Center for Medical Home Implementation


[email protected]

847/434-7087

Krysta Gerndt, MPH

Program Manager


[email protected]

847/434-7616

Christina Boothby, MPA

Manager



[email protected]

847/434-4311





A project of the National Center for Medical Home Implementation, supported by a cooperative agreement between the American Academy of Pediatrics and the Maternal and Child Health Bureau, Health Resources and Services Administration under grant number U43MC09134.

Orientation Webinar/CallApril 27, 2016, Noon – 1 pm Eastern

OrApril 28, 2016, Noon – 1 pm Eastern

Agenda

Agenda Item Speaker Time

Welcome, Roll Call, Introductions Alex Kuznetsov, RD

Program Manager

National Center for Medical Home

Implementation

5 min

Overview of Family Engagement

Quality Improvement Project

Ruth Gubernick, MPH

Quality Improvement Advisor

15 min

Overview of Quality Improvement

Data Aggregator

Kristen Gerage, MPH

QIDA Manager

15 min

Quality Improvement Overview Ruth Gubernick, MPH 10 min

Learning Session and Next Steps Alex Kuznetsov, RD 5 min

Questions and Answers All 10 min

Welcome and Introductions

Expert Work Group Project Staff/Consultants

Megan M Tschudy, MD, MPH, FAAP Michelle Esquivel, MPH

Camille Graham, MD, FAAP Christina Boothby, MPA

Julia Richerson, MD, FAAP Krysta Gerndt, MPH

Alan Weller, MD, FAAP Alex Kuznetsov, RD

Janet DesGeorges Ruth Gubernick, MPH

Pam Kelley, PhD

Project Overview

Ruth Gubernick, MPH



Project Aim

By January 2017, 10 pediatric primary care practice

teams will work individually and collaboratively to

test, implement, disseminate, and plan to sustain

strategies that lead to improved family engagement

in clinical practice through enhanced shared

decision-making and connection of families to

appropriate supports and services.

Medical Record Review Measures

80% or more patients have documentation in their

medical record that patient/family concerns were

elicited at the most recent health supervision visit.


medical record that patient/family concerns were

addressed at the most recent health supervision

visit or a plan to address the concerns was made.



medical record that family strengths were

identified and discussed at the most recent health

supervision visit.


medical record that a post-visit medical summary

or a comprehensive care plan was created or

updated/maintained at a most recent health

supervision visit.



medical record that a current copy of their post-

visit medical summary or comprehensive care

plan was reviewed through an active form of

family engagement and offered to

patient/families at a most recent health supervision

visit.

80% or more of patients have documentation in their

medical record that families received a follow-up

discussion of age-appropriate screening results

on the same day as the screening.

Post-visit Family Survey Measures

80% of parents/families will indicate they can be

honest with their child’s doctors and nurses

about the choices they make for their child.

80% of parents/families will indicate that doctors

and nurses explained things about their child’s

health in a way that was easy to understand.


and nurses listened to what the family had to

say.

Post-visit Family Survey Measures


and nurses gave thoughtful responses to their

questions and concerns.

80% of parents/families will indicate that receptions

and other clinic staff treated them with respect.

80% parents/families will indicate that doctors and

nurses involved them in decisions about their

child’s health.

Project Timeline

Pre-work/Baseline

(May 2016)

Action Period(July – December 2016)

Part

icip

an

t E

nro

llm

en

t

(Ap

ril

-M

ay 2

016)

• Project orientation webinar

and QIDA demo to

understand data collection

system

• Submit data on:

• 20 patients via

medical record

reviews

• 10

families/caregivers

via post-visit family

surveys using QIDA

Learn

ing s

essio

n o

n q

ualit

y

impro

vem

ent

and t

opic

al education

(June 3

-4, 2016)

• Submit data monthly on 10

patients via medical record

reviews using QIDA

• Submit data monthly on 10

families via post-visit family

surveys using QIDA

• Participate in monthly

educational

webinars/conference calls

• Implement interventions using

PDSA cycles

• Communicate with other

participants via listserv

• Participate in at least two

quality improvement coaching

calls

Attesta

tion P

rocess, second in

-pers

on

learn

ing

sessio

n

(Janua

ry –

Febru

ary

2017)

Pre-Work and Baseline Data Collection

Date Activity

April 29, 2016 RSVP for in-person learning session

May 2, 2016 Consent forms signed and returned to

[email protected] or faxed to 847/228-5034

May 2, 2016 Local IRB approval received, if necessary.

Teams cannot begin data collection before receiving

IRB approval

May 9, 2016 Book travel for in-person learning session

May 13, 2016 Pre-Implementation survey completed

Baseline medical records reviewed (20)

Post-visit family surveys collected (10)


Pre-Work and Baseline Data Collection

You cannot begin pre-work until consent form is

signed.

This project will use the Quality Improvement Data

Aggregator (QIDA), a data collection and

aggregation tool.

Link to QIDA:

http://qidata.aap.org/familyengagement/

QIDA User Manual will be emailed to you after this

webinar, including registration information.

http://qidata.aap.org/familyengagement/

Quality Improvement Data Aggregator

Pre-Implementation Survey

Assess current systems in your practice that

enhance and encourage family engagement.

Each team will complete one pre-implementation

survey by May 13, 2016.

Review project instruction packet (emailed to you by

Alex Kuznetsov, [email protected]) for details.


Baseline Medical Record Review

Each practice team will review medical records for

the first 20 patients age 0-18 years seen in the clinic

for a health supervision visit.

Enter data into the QIDA.

Must be submitted no later than May 13, 2016.




Post-Visit Family Survey

Each practice team will collect family surveys from

the first 10 families (who agree to participate) of

patients age 0-18 years seen in the practice for

health supervision visits.

Collect surveys from families of patients seen by

any/all providers in practice (available in English and

Spanish).

Enter survey results into the QIDA.

Survey questions modeled after CG-CAHPS.




Quality Improvement Data Aggregator

Kristen Gerage, MPH

Manager, Quality Improvement Data Aggregator

[email protected]


QIDA Overview

Project specific url:


Access emails will be sent post webinar on 4/28:

[email protected]

Works best in Firefox or Chrome browsers

QIDA specific issues or questions: [email protected]

Demo-Individual participant




QIDA Home Page

Quality Improvement Methodology

Ruth Gubernick, MPH



The Model for Improvement

From: Associates in Process Improvement

Plan-Do-Study-Act (PDSA) Cycles

Use of PDSA Cycles

Multiple cycles

Evidence

Best

Practice

Testable

Ideas

Changes that

Result in

Improvement

A P

S D

A P

S D

Very Small Scale Test

Follow-up Tests

Wide-Scale Tests of Change

Implementation of

Change

Learning Session Overview

Friday June 3, 2016, 1:30 – 7:00 pm

Saturday, June 4, 2016, 7:30 am – 1:30 pm

Hyatt Rosemont, Rosemont, Illinois

• Continued overview of quality improvement methodology

• Educational sessions on family engagement, shared decision-

making, sustainability

• Collaborative team learning and planning PDSA cycles

• Guest faculty include pediatric clinicians and family leaders

RSVPs are due April 29, 2016

All travel reservations are due May 9, 2016

Important Dates and Next Steps

Date Activity

April 29, 2016 RSVP for in-person learning session to Beth Evans,

[email protected]

May 2, 2016 Consent forms signed and returned to Alex Kuznetsov

([email protected]) or faxed to 847/228-5034

May 2, 2016 Determine if local IRB is necessary for your institution, obtain

local IRB approval before collecting any baseline data.

May 9, 2016 All travel must be booked for in-person learning session

May 13, 2016 Pre-implementation survey completed

20 baseline medical record reviews entered into QIDA

10 baseline post-visit family surveys entered into QIDA



Important Dates and Next Steps

Date Activity

June 3-4,

2016

In-person learning session

July –

December

2016

Action period

• Monthly medical record reviews (10 records/month)

• Monthly post-visit family survey collection (10 surveys/month)

• Monthly progress reports

• Monthly educational calls/webinars

• Quality improvement coaching

January 30,

2017

Post-implementation survey due

January 2017 Second in-person learning session

January –

February

2017

Qualitative interviews (OPTIONAL)

Project Staff Contact Information

Alex Kuznetsov

Program Manager

[email protected]

Krysta Gerndt

Program Manager

[email protected]

Christina Boothby

Manager


[email protected]




Questions

Welcome to the Family Engagement Quality Improvement Project!

We would like to find out some general information about the family engagement activities withinyour office setting. Please complete this pre-implementation survey after the orientation webinar. The survey will take no more than 15 minutes of your time. Only one survey is needed per practiceteam.

Your survey responses will be kept strictly confidential. We will never link your responses to yourname in reports or anywhere else.

If you have any questions, please contact Alex Kuznetsov, RD, at 847-434-7087 [email protected].





Family Engagment Quality Improvement Project Pre-Implementation Survey

1. Please enter your practice name:*


Part One: Family Engagement Activities


2. Which of the following methods for gathering patient and family feedback does your practice currentlyuse to support or inform its interactions with your patients and families? (select all that apply)

*





Ask patients/families for informal feedback at visits



3. For any of the methods you checked in the previous question, how does your practice use theinformation to support or inform its interactions with your patients and families? (select all that apply)

*

Review feedback to understand patient/family perspective and assess if patient/family needs are being met


Improvement teams review feedback, plan and test improvement ideas to incorporate patients’/families perspectives



4. In your direct interactions with your patients and families, describe your approach to identifying theirculture, beliefs, values, and practices (select all that apply):

*







5. Do you provide a community resource list to your patients who may need it?*

Yes

No

Don't Know



6. If yes, please describe the types of information included on the community resource list (select all thatapply):

*

Education resources

Child Development/Behavior resources


Safety resources


Teen resources




7. Do you have a system in place for tracking and following up on referrals to appropriate supports andservices for patients/families/caregivers (these supports could include community resources, peer-to-peersupports, medical specialists, etc)?

*

Yes

No

Don't Know



8. If yes, please specify the system you have in place for tracking and following up on referrals toappropriate supports and services for patients/families/caregivers:

*

Checkbox in patient medical record

Referral fax back form

Requests for patient summary

Follow-up phone calls

Patient registry




9. Does your practice create a post-visit medical summary or comprehensive care plan for patients/familiesat every visit? A comprehensive care plan includes an expanded medical summary, an emergencytreatment plan, and a dynamic, explicit plan of care, also known as an action plan. A post-visit medicalsummary is a history of medical information that includes the following:

Basic demographics and contact information, including the following:

Patient and family, with guardianship identified, if applicableContact information for patient and family, including cell phone numbers and email addressesMedical HomeEmergency Contacts

Key medical, surgical, and injury historyCurrent medications, including medication reconciliationAllergiesImmunization recordInsurance informationSpecial instructions

*

Yes

No

Don't Know

10. Does your practice review and update the post-visit medical summary or comprehensive care plan withthe patient and family at each visit?

*

Yes

No

Don't Know

11. Does your practice have processes to communicate age-appropriate screening results and theirimplications to patients and families? Age-appropriate screenings include any/all listed in the Bright FuturesPeriodicity Schedule, as well as other screenings related to social determinants of health, as appropriateand necessary.

*

Yes

No

Don't Know

Part Two: Partnering with Patients and Families


12. "Shared decision making” is a collaborative process that allows patients and their health care providersto make health care decisions together, taking into account the best scientific evidence available, as well asthe patient’s values and preferences.

A model for shared decision making includes: 1) introducing choice; 2) describing options; and 3) helpingpatients explore preferences and make decisions.

Based on this definition, how often would you say you engage in shared decision making with the patientsand families in your care?

*

Never

Rarely

Occasionally

Frequently

Always

13. How do you implement shared decision making in your office (select all that apply):*






We do not use any shared decision making techniques


End of Survey



Please click "Done" to submit your survey.Thank you!

Family Engagement Quality Improvement Project: Learning Session

June 3-4 2016 Hyatt Rosemont

6350 N River Road Rosemont, Illinois, 60018

Room: Coleman B Day 1, June 3, 2016 (Half Day), 1:30 – 7:00 pm

TIME SESSION FACULTY/SPEAKER(S)

1:30 – 2:00 Registration

NCMHI Staff

2:00 – 2:20 Welcome & Family Engagement Quality Improvement Project Overview

Megan M. Tschudy, MD, MPH, FAAP

2:20- 2:30 Housekeeping Announcements Overview of Learning Session

NCMHI Staff

2:30 – 3:10 Topical Session: Family Story and Introduction to Family Engagement

Vicki Hunting, BA

3:10 – 3:30 Family Engagement: Team Time Practice Teams

3:30 – 4:00 Break

4:00 – 5:00 Breakout Session 1: Quality Improvement in the Real World

Quality Improvement Science (continued)

Project aims, measures, and goals

Change package; sample tests of change; resources & tools

Room: Coleman B

Ruth Gubernick, MPH

Breakout Session 2: Introduction to Quality Improvement with Parent/Caregiver Partners Room: Lindbergh A

Vicki Hunting, BA

5:00 – 5:30 Topical Session: Sustainability Alan Weller, MD, FAAP

5:30 – 7:00 Working Dinner

Storyboard presentations

Beginning to plan Plan, Do, Study, Act (PDSA) cycles

Collaborative learning time

Project Teams Ruth Gubernick, MPH Alan Weller, MD, FAAP Julia Richerson, MD, FAAP Camille Graham, MD, FAAP Vicki Hunting, BA Brad Thompson, MA LPC

7:00 Closing Remarks, Adjourn for Day Camille Graham, MD, FAAP


June 3-4, 2016 Hyatt Rosemont


Room: Coleman B Day 2, June 4, 2016 (Full Day), 7:30 am – 1:30 pm


7:30 – 8:00 Breakfast/ Welcome Back & Overview of Day NCMHI Staff

8:00 – 8:30 Continuation of Storyboard Presentations Project Teams

8:30 – 9:10 Topical Session: Shared Decision Making

Brad Thompson, MA LPC Camille Graham, MD, FAAP

9:10 – 9:30 Shared Decision Making: Team Time Practice Teams

9:30 – 10:00 Breakout Session 3: Report on Baseline Data and Pre-Implementation Survey Room: Coleman B

Ruth Gubernick, MPH

Breakout Session 4: Helpful Tools for Your Role as a Parent/Caregiver Partner Room: Lindbergh A

Vicki Hunting, BA

10:00 – 10:30 Break

10:30 – 1:00 Lunch served at 12:00 (Noon)

Working Lunch:

Planning PDSA Cycles and Team Collaborative Learning Time (Continuation of Day 1 Session)

Practice Teams Report Back Drafted PDSA Cycles

Practice Teams Ruth Gubernick, MPH Julia Richerson, MD, FAAP Camille Graham, MD, FAAP Vicki Hunting, BA Brad Thompson, MA LPC

1:00 – 1:30 Wrap Up, Next Steps, Q&A, Learning Session Evaluation Ruth Gubernick, MPH NCMHI Staff

1:30 Closing Remarks, Adjourn Camille Graham, MD, FAAP


June 3-4 2016 Hyatt Rosemont


Room: Coleman B Day 1, June 3, 2016 (Half Day), 1:30 – 7:00 pm


1:30 – 2:00 Registration

NCMHI Staff

2:00 – 2:20 Welcome & Family Engagement Quality Improvement Project Overview

Megan M. Tschudy, MD, MPH, FAAP

2:20- 2:30 Housekeeping Announcements Overview of Learning Session

NCMHI Staff

2:30 – 3:10 Topical Session: Family Story and Introduction to Family Engagement

Vicki Hunting, BA

3:10 – 3:30 Family Engagement: Team Time Practice Teams

3:30 – 4:00 Break

4:00 – 5:00 Breakout Session 1: Quality Improvement in the Real World

Quality Improvement Science (continued)

Project aims, measures, and goals

Change package; sample tests of change; resources & tools

Room: Coleman B

Ruth Gubernick, MPH

Breakout Session 2: Introduction to Quality Improvement with Parent/Caregiver Partners Room: Lindbergh A

Vicki Hunting, BA

5:00 – 5:30 Topical Session: Sustainability Alan Weller, MD, FAAP

5:30 – 7:00 Working Dinner

Storyboard presentations

Beginning to plan Plan, Do, Study, Act (PDSA) cycles

Collaborative learning time

Project Teams Ruth Gubernick, MPH Alan Weller, MD, FAAP Julia Richerson, MD, FAAP Camille Graham, MD, FAAP Vicki Hunting, BA Brad Thompson, MA LPC

7:00 Closing Remarks, Adjourn for Day Camille Graham, MD, FAAP


June 3-4, 2016 Hyatt Rosemont


Room: Coleman B Day 2, June 4, 2016 (Full Day), 7:30 am – 1:30 pm


7:30 – 8:00 Breakfast/ Welcome Back & Overview of Day NCMHI Staff

8:00 – 8:30 Continuation of Storyboard Presentations Project Teams

8:30 – 9:10 Topical Session: Shared Decision Making

Brad Thompson, MA LPC Camille Graham, MD, FAAP

9:10 – 9:30 Shared Decision Making: Team Time Practice Teams

9:30 – 10:00 Breakout Session 3: Report on Baseline Data and Pre-Implementation Survey Room: Coleman B

Ruth Gubernick, MPH

Breakout Session 4: Helpful Tools for Your Role as a Parent/Caregiver Partner Room: Lindbergh A

Vicki Hunting, BA

10:00 – 10:30 Break

10:30 – 1:00 Lunch served at 12:00 (Noon)

Working Lunch:

Planning PDSA Cycles and Team Collaborative Learning Time (Continuation of Day 1 Session)

Practice Teams Report Back Drafted PDSA Cycles

Practice Teams Ruth Gubernick, MPH Julia Richerson, MD, FAAP Camille Graham, MD, FAAP Vicki Hunting, BA Brad Thompson, MA LPC

1:00 – 1:30 Wrap Up, Next Steps, Q&A, Learning Session Evaluation Ruth Gubernick, MPH NCMHI Staff

1:30 Closing Remarks, Adjourn Camille Graham, MD, FAAP

Family Engagement Quality Improvement Project In-person Learning Session, June 3-4, 2016

Attendee Roster

All About Children Pediatric Partners PC 655 Walnut Street, West Reading, PA, 19611

Anna Karasik Pediatrician [email protected]

Penny Porter Nurse Practitioner [email protected]

Eric Hamlette Intake Coordinator/Patient Advocate [email protected]

Elisa Cintron Parent/Caregiver Partner [email protected]

Southwest Montana Community Health Center 445 Centennial Ave, Butte, MT, 59701

Cathy White Pediatrician [email protected]

Betty Warren Nurse [email protected]

Shawna Holland Office Administrator [email protected]

Karla Ahlborn Parent/Caregiver Partner [email protected]

Doernbecher Pediatric and Adolescent Health 3181 SW Sam Jackson Park Road, Portland, OR, 97239

Melissa Weddle Pediatrician [email protected]

Nicole Ripsom Nurse [email protected]

Tyanne Conner Patient Access Services [email protected]

Kerri Derrevere Parent/Caregiver Partner [email protected]

Southeastern Pediatric Associates 364 Honeysuckle Road, Dothan, AL, 36305

Richa Gatlin Pediatrician [email protected]

Victoria Beverett Nurse [email protected]

Lindsey Hughes PCMH Patient Care Coordinator [email protected]

Tiffany Holloway Parent/Caregiver Partner [email protected]

Hamakua-Kohala Health 45-549 Plumeria Street, Honokaa, HI, 96727

Pamela McKenna Pediatrician [email protected]

Nellie Villena Nurse [email protected]

Dena Soares Front Desk Supervisor [email protected]

January Kauanoe [email protected] Parent/Caregiver Partner






















Family Engagement Quality Improvement Project In-person Learning Session, June 3-4, 2016

Attendee Roster

Pediatric Associates, PC 3749 West 95th Street, Evergreen Park, IL, 60805

Subash Arora Pediatrician [email protected]

Grace Schnell Office Administrator [email protected]

St Christopher’s Practice Associates: Center for the Urban Child 3645 North Front Street, Philadelphia, PA, 19134

Katie McPeak Pediatrician [email protected]

Germaine Solomon Medical Assistant [email protected]

Timika Savage Manager of Practice Operations [email protected]

Heywood Pediatrics 242 Green Street, Suite 212, Gardner, MA 01440

Sari Miettinen Pediatrician [email protected]

Melissa Jackson Medical Assistant [email protected]

UNC Children’s Primary Care Clinic 1512 Franklin Street, Suite 100, Chapel Hill, NC, 27514

Kori Flower Pediatrician [email protected]

Rebecca Wellborn Nurse [email protected]

Darragh Davis Community Outreach Specialist [email protected]

Antoinette Upchurch Parent/Caregiver Partner

Summit Pediatrics 750 Round Valley Drive, Park City, UT, 84098

Kathy Ostler Pediatrician [email protected]

Dusty Frisby Care Coordinator [email protected]

Valinda Cervantes Front Desk [email protected]

Liz Wall Parent/Caregiver Partner [email protected]















Family Engagement Quality Improvement Project Learning Session Faculty

PROJECT LEADER Megan M. Tschudy, MD, MPH, FAAP Assistant Professor, Department of Pediatrics Assistant Medical Director, Harriet Lane Clinic Division of General Pediatrics and Adolescent Medicine Johns Hopkins School of Medicine 443-287-8954 [email protected] FACULTY Vicki Hunting, BA Director of Data and Evaluation

Hands & Voices, Inc. Headquarters 515-988-8512 [email protected] Camille Graham, MD, FAAP Executive Community Physician Leader Medical Director, Cincinnati Pediatric Research Group Assistant Professor, Division of General and Cincinnati Children’s Hospital 513-803-8065 [email protected] Julia Richerson, MD, FAAP Medical Director, Interim Family Health Centers of Louisville 502-772-8120 [email protected] Brad Thompson, MA LPC

Director, The HALI Project 806-352-5647 [email protected]

Alan Weller, MD, FAAP Assistant Professor of Pediatrics Robert Wood Johnson University Hospital 732-235-7044 [email protected] CONSULTANTS Ruth Gubernick, PhDc, MPH Quality Improvement Advisor 856-477-2177 [email protected] STAFF Christina Boothby, MPA Manager, National Center for Medical Home Implementation American Academy of Pediatrics 847-434-4311 [email protected] Michelle Esquivel, MPH Director, Division of Children with Special Needs Director, National Center for Medical Home Implementation American Academy of Pediatrics 847-434-4989 [email protected] Krysta Gerndt, MPH Program Manager American Academy of Pediatrics 847-434-7616 [email protected] Alex Kuznetsov, RD Program Manager National Center for Medical Home Implementation American Academy of Pediatrics 847-434-7087 [email protected]



Family Engagement Quality Improvement Project Work Group Roster

PROJECT LEADER Megan M. Tschudy, MD, MPH, FAAP Assistant Professor, Department of Pediatrics Assistant Medical Director, Harriet Lane Clinic Division of General Pediatrics and Adolescent Medicine Johns Hopkins School of Medicine 443/287-8954 [email protected] MEMBERS Janet DesGeorges Executive Director, Hands and Voices, Inc. Parent Consultant, Colorado Home Intervention Program 303-492-6283 [email protected] Camille Graham, MD, FAAP Executive Community Physician Leader Medical Director, Cincinnati Pediatric Research Group Assistant Professor, Division of General and Cincinnati Children’s Hospital 513-803-8065 [email protected] Julia Richerson, MD, FAAP Medical Director, Interim Family Health Centers of Louisville 502-772-8120 [email protected] Alan Weller, MD, FAAP Assistant Professor of Pediatrics Robert Wood Johnson University Hospital 732/235-7044 [email protected]

CONSULTANTS Ruth Gubernick, PhDc, MPH Quality Improvement Advisor 856-477-2177 [email protected] Pam Kelley, PhD Research and Evaluation Consultant Kelley Analytics, LLC 732/742-8908 [email protected] STAFF Christina Boothby, MPA Manager, National Center for Medical Home Implementation American Academy of Pediatrics 847/434-4311 [email protected] Michelle Esquivel, MPH Director, Division of Children with Special Needs Director, National Center for Medical Home Implementation American Academy of Pediatrics 847/434-4989 [email protected] Krysta Gerndt, MPH Program Manager American Academy of Pediatrics 847/434-7616 [email protected] Alex Kuznetsov, RD Program Manager National Center for Medical Home Implementation American Academy of Pediatrics 847/434-7087 [email protected]

MODEL FOR IMPROVEMENT Team Name:

Plan a Test of Change Cycle #:___ Start Date: ____ End Date: ____

Objective for this PDSA Cycle (Aim):

PLAN: QUESTIONS PREDICTIONS

PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE

PLAN FOR COLLECTION OF DATA: WHO, WHAT, WHEN, WHERE

DO: CARRY OUT THE CHANGE OR TEST; COLLECT DATA AND BEGIN ANALYSIS.

REPORT THE RESULTS OF YOUR TEST HERE. Describe observations, problems encountered, and special circumstances.

STUDY: COMPLETE ANALYSIS OF DATA; SUMMARIZE WHAT WAS LEARNED

ACT: ARE WE READY TO MAKE A CHANGE? Modifications or refinements to the test?

PLAN FOR THE NEXT CYCLE

Act Plan

Study Do

MODEL FOR IMPROVEMENT Team Name: ABC Pediatrics

Plan a Test of Change Cycle #:_1_Start Date: 7/12/16 End Date: 7//13

Objective for this PDSA Cycle (Aim): By September 30, 2016, our practice will be using the shared decision making (SDM) aid, “ADHD Medication Choice Cards,” with at least 95% of the parents/caregivers of our patients who are newly diagnosed with ADHD and are interested in medication as a treatment option.

PLAN: QUESTIONS Can our care coordinator send out this decision aid, as well as the Pre-encounter/visit cards and booklet on ADHD treatment modalities to the appropriate parents/caregivers via the patient portal at least 1 week prior to the scheduled visit? Will parents/caregivers read and complete the personal information and cost estimates prior to being seen by the physician? Will Dr. Gordon have time to review and discuss it with the family? Will this aid be helpful to parents/caregivers?

PREDICTIONS We predict that our care coordinator, Linda, will successfully send these resources/tools at least 1 week prior to the visit at least 95% of the time. We predict at least 90% of the parents/caregivers will complete the treatment goals and preferences card; 70% will add behavior treatments tried, currently trying or interested in trying; 75% will add personal information to the Medication Choice card; only 50% will complete the out-of-pocket cost estimates. Dr. Gordon predicts this will increase the visit time but will help the parent/caregiver be more knowledgeable and involved with the treatment plan.

PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Tasks: Linda will confirm that there is 1 or more patient(s), <11 yrs. old and newly diagnosed with ADHD scheduled for appointments on July 12th and/or 13th. She will also print out the Medication Choice cards, as instructed on the Cincinnati Children’s website (http://www.cincinnatichildrens.org/service/j/anderson-center/evidence-based-care/decision-aids/ ). Dr. Gordon will study the “Card Guide”( http://www.cincinnatichildrens.org/WorkArea/linkit.aspx?LinkIdentifier=id&ItemID=100745&libID=100440 ) for discussing medication treatment options with the parent/caregiver. On July 5th, Linda will send a message and the ADHD Pre-visit cards and Medication Choice cards via the patient portal to the parents/caregivers whose children meet the criteria, with instructions to complete the goals/preferences, behavior treatment(s) and personal information sections and out-of-pocket medication cost estimates, if appropriate. Parents will be asked to bring the completed information to their visit. Prior to entering the exam room, Dr. Gordon will be handed the parent-completed goal/preference card, behavioral treatment card and ADHD medication choice cards by the Joyce (MA).

PLAN FOR COLLECTION OF DATA: WHO, WHAT, WHEN, WHERE At the end of each day, Linda will review the records of those newly diagnosed ADHD patients seen by Dr. Gordon. She will record total # of patients who brought with them the ADHD SDM aids and note what sections had been completed prior to the visit. Dr. Gordon will share parent/caregiver feedback and his own reflections about the process.






Act Plan

Study Do


http://www.cincinnatichildrens.org/WorkArea/linkit.aspx?LinkIdentifier=id&ItemID=100745&libID=100440


Plan a Test of Change Cycle #:_1_Start Date: 7/12/16 End Date: 7/1316


PLAN: QUESTIONS Can our care coordinator send out this decision aid, as well as the Pre-encounter cards and booklet on ADHD treatment modalities to the appropriate parents/caregivers via the patient portal at least 1 week prior to the scheduled visit? Will parents/caregivers read and complete the personal information and cost estimates prior to being seen by the physician? Will Dr. Gordon have time to review and discuss it with the family? Will this aid be helpful to parents/caregivers?

PREDICTIONS We predict that our care coordinator, Linda, will successfully send these resources/tools at least 1 week prior to the

visit at least 95% of the time. We predict at least 90% of the parents/caregivers will complete the treatment goals and preferences card; 70% will add behavior treatments tried, currently trying or interested in trying; 75% will add personal information to the Medication Choice card; only 50% will complete the out-of-pocket cost estimates. Dr. Gordon predicts this will increase the visit time but will help the parent/caregiver be more knowledgeable and involved with the treatment planning.

PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Tasks: Linda will confirm that there is 1 or more patient(s), <11 yrs. old and newly diagnosed with ADHD scheduled for appointments on July 12th and/or 13th. She will also print out the Medication cards, as instructed on the Cincinnati Children’s website (http://www.cincinnatichildrens.org/service/j/anderson-center/evidence-based-care/decision-aids/ ). Dr. Gordon will study the “Card Guide” (http://www.cincinnatichildrens.org/WorkArea/linkit.aspx?LinkIdentifier=id&ItemID=100745&libID=100440) for discussing medication treatment options with the parent/caregiver. On July 5th, Linda will send a message and the ADHD Pre-visit cards and Medication cards via the patient portal to the parents/caregivers whose children meet the criteria, with instructions to complete the goals/preferences, behavior treatment(s) and personal information sections and out-of-pocket medication cost estimates, if appropriate. Parents will be asked to bring the completed information to their visit. Prior to entering the exam room, Dr. Gordon will be handed the parent-completed goal/preference card, behavioral treatment card and ADHD medication choice cards by the Joyce (MA).



REPORT THE RESULTS OF YOUR TEST HERE. Describe observations, problems encountered, and special circumstances. Linda sent messages and resources on July 5th to 3

parents/caregivers who children met the criteria and had appointments on July 13th. All 3 parents brought the cards with them but only one had completed all the requested information. All 3 parents wanted to discuss medication options. Dr. Gordon said the first discussion took a long time because he presented all of the medication choice issue cards but forgot to ask the parent which one she wanted to discuss first. Found he didn’t need to discuss all 5 cards when he remembered to do that (ask first) with the other 2 parents!

STUDY: COMPLETE ANALYSIS OF DATA; SUMMARIZE WHAT WAS LEARNED Only one parent completed the medication cost estimate. One parent was unable to get the info from her health plan and one forgot. Dr. Gordon reported that following the “card guide” was helpful for him but he feels he needs more practice! Parents reported that the aids increased their knowledge of ADHD treatment options, were easy to understand and helped them be involved in making the decision about their child’s treatment plan. Dr. Gordon reported parents more involved. They all liked the medication issue cards. One parent was surprised when Dr. Gordon asked her which medication issue she wanted to discuss first. One parent expressed appreciation for the booklet and for being referred to a parent support group.

ACT: ARE WE READY TO MAKE A CHANGE? Modifications or refinements to the test? Plan for

next cycle: What happens when parent/caregiver has not completed or brought the cards with them? Can they be given

to the parent/caregiver to complete in the exam room or completed by Dr. Gordon, in discussion with the family? Note: We also need to learn what summer behavioral treatment programs are available in our community/county!

Act Plan

Study Do




Plan a Test of Change Cycle #:_1_Start Date: 7/1/16 End Date: 7/2/16

Objective for this PDSA Cycle (Aim): By July 31, 2016, our practice will use the Teach Back Method as a strategy to actively Engage patients and their families with their Asthma Actions Plan so that at least 80% have documentation in their record of the use of this patient engagement tool at their most recent appropriate acute or well-care visit.

PLAN: QUESTIONS Do Dr. Green and the clinical staff know how to conduct Teach Back?

Can this strategy be incorporated into the visit? Can it be documented in the EHR? PREDICTIONS It will take some practice for Dr. Green to feel comfortable asking for patient/parent

to share in own words what she explained regarding when to use which asthma medications.

PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Task: Prior to 7/1, Dr. Green and clinical staff will review the Teach Back toolkit (http://www.nchealthliteracy.org/toolkit/tool5.pdf ) and the “Always Use Teach Back” resources (http://www.ihi.org/resources/Pages/Tools/AlwaysUseTeachBack!.aspx) Dr. Green will conduct teach-back with the last patient scheduled tomorrow who has a diagnosis of asthma and a newly created or updated asthma action plan. Dr. Green will review the plan with the patient and/or parent/caregiver and then will ask “I want to be sure that I explained the medications correctly. Can you tell me how and when you are going to take/give these medicines?” This process will be repeated until the patient/parent or caregiver can explain it properly in own words. At end of visit, Dr. Green will ask patient and/or parent/caregiver for their feedback about the usefulness of the technique.

PLAN FOR COLLECTION OF DATA: WHO, WHAT, WHEN, WHERE Documentation of feedback from patient and/or parent/caregiver about the usefulness of the method. Dr. Green will also give feedback and her reflections about using the teach-back method.






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http://www.nchealthliteracy.org/toolkit/tool5.pdf

http://www.ihi.org/resources/Pages/Tools/AlwaysUseTeachBack!.aspx





Can this strategy be incorporated into the visit? Can it be documented in the EHR? PREDICTIONS It will take some practice for Dr. Green to feel comfortable asking for patient/parent to share in own words what she explained regarding when to use which asthma medications.

PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Task: Prior to 7/1, Dr. Green and clinical staff will review the Teach Back toolkit (http://www.nchealthliteracy.org/toolkit/tool5.pdf ) and the “Always Use Teach Back” resources (http://www.ihi.org/resources/Pages/Tools/AlwaysUseTeachBack!.aspx) Dr. Green will conduct teach-back with the last patient scheduled tomorrow who has a diagnosis of asthma and a newly created or updated asthma action plan. Dr. Green will review the plan with the patient and/or parent/caregiver and then will ask “I want to be sure that I explained the medications correctly. Can you tell me how and when you are going to take/give these medicines?” This process will be repeated until the patient/parent or caregiver can explain it properly in own words. At end of visit, Dr. Green will ask patient and/or parent/caregiver for their feedback about the usefulness of the technique. PLAN FOR COLLECTION OF DATA: WHO, WHAT, WHEN, WHERE Documentation of feedback from patient and/or parent/caregiver about the usefulness of the method. Dr. Green will also give feedback and her reflections about using the teach-back method.



Dr. Gordon conducted the teach-back method, as planned. She found she talked too fast and needed to slow down so she could explain the plan clearly to the patient’s mother.

STUDY: COMPLETE ANALYSIS OF DATA; SUMMARIZE WHAT WAS LEARNED The parent reported she felt intimidated at first that she was going to have to explain what she heard but said the way Dr. Gordon explained that she wanted to make sure she had explained it well made her feel better. Dr. Gordon said she learned to keep the instructions simple and not rush through them. She felt it will take some practice to get better at doing it, as well as to remember to do it routinely.


Plan for next cycle: Dr. Gordon will use the teach-back method for the first 2 patients scheduled tomorrow with a

diagnosis of asthma and will ask patients/families for feedback again. She will share what she’s learned with her colleagues at the staff meeting later in the week.

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Objective for this PDSA Cycle (Aim): By August 31, 2016, at least 90% of the primary caregivers of our 11 yrs. old patients who were seen for a well visit that month will have completed and returned the Pre-visit Contact form via the patient portal at least 24 hours prior to the scheduled appointment. This will help update our healthcare information since the patient’s last visit and the top 3 concerns/topics to be discussed at the visit.

PLAN: QUESTIONS Will the parents/caregivers respond to our request via the Patient Portal?

How far in advance of the appointment should staff send the request for the completion of the form?

PREDICTIONS At least 75% of the parents/caregivers will return the form at least 24 hrs. before scheduled appointment.

PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Starting in mid-July, secure emails will be sent by Mary (PSA) on Mondays via the patient portal to primary caregivers 2

weeks prior to each patient’s scheduled well-care visit. The email will include the Pre-visit Contact form and instructions on

how to complete and submit it at least 24 hrs. before the patient’s scheduled visit. Returned forms will be scanned into the patient’s record. Joyce (MA) will access and review the form when rooming the patient. If no form is there, she will ask the questions and document the answers in the patient’s record for physician/NP to use.

PLAN FOR COLLECTION OF DATA: WHO, WHAT, WHEN, WHERE At the end of 8/1, count # of 11 yrs. old patients seen that day for well visit and how many had documentation in the record of a completed pre-visit form (# completed prior to visit and # completed that day). At end of visit, parent/caregiver will be asked for feedback about the form…was it useful? What did they like about it? What changes should be made?






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PLAN: QUESTIONS Will the parents/caregivers respond to our request via the Patient

Portal? How far in advance of the appointment should staff send the request for the completion of the form?





PLAN FOR COLLECTION OF DATA: WHO, WHAT, WHEN, WHERE At the end of each day during week of 8/1, count # of 11 yrs. old patients seen that day for well visit and how many had documentation in the record of a completed pre-visit form (# completed prior to visit). At end of visit, parent/caregiver will be asked for feedback about the form…was it useful? What did they like about it? What changes should be made?



On July 18th, Mary sent the secure emails to the primary caregiver of each 11 yrs. old patient with an appointment scheduled during the week of Aug.1st. Of the 10 families she emailed, all had portal accounts (thanks to our recent enrollment campaign!); 1 did not have a valid email address so she followed up with that mom by phone. Two completed forms were returned by the end of the day!

STUDY: COMPLETE ANALYSIS OF DATA; SUMMARIZE WHAT WAS LEARNED Of the 10 parents/caregivers contacted for that week’s appointments, only 6 (60%) completed and returned the form at least 24 hrs. prior to the visit. Joyce report that 2 completed/submitted forms were not found in the patient’s record to review and the questions had to be asked again which did not make the parent/caregiver happy. All 6 parents/caregivers offered feedback: Q2 had a duplicate question; for Q4, being asked “who” was confusing; for Q5, how do they know if the patient will need bloodwork? They all liked Q7 (top 3 concerns/topics to discuss at the visit). Four reported getting the email 2 weeks before the visit gave them time to put it aside. A reminder would be helpful. Dr. Gordon reported she forgot to review the form for the first two 11 yrs. old patients she saw (she’d missed Huddle that morning!). An additional 4 parents/caregivers who scheduled the patient’s adol. well-visit less than 2 week before the appointment date did not receive a form via the portal prior to the appointment so all had to complete the form at the appointment!


PLAN FOR THE NEXT CYCLE: Mary will generate emails, with form, 1 week before appointment data and will edit message of auto-reminder sent 48 hrs. before appointment date. Joyce will download submitted forms each day and scan them into the patient’s record prior to the visit. Huddle will include # of 11 yrs. old being seen for well-visits that day (as reminder to review/discuss pre-visit form and HPV decision aid which are both currently being tested).

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Objective for this PDSA Cycle (Aim): By August 1, 2016, at least 90% of our patients who receive care coordination services and are scheduled to be seen for a visit that month will complete the Family- Centered Care (FCC) Coordination Questionnaire via our patient portal prior to the scheduled appointment so we have better information about family concerns, needs and preferences in the care their child receives.

PLAN: QUESTIONS What percentage (%) of those patients/families have an activated

portal account? Will these questionnaires be completed and returned to our care coordinator prior to the patient’s scheduled visit?

PREDICTIONS Since we have worked hard to document a current email address in the EHR for each patient/family, we believe that at least 75% of our families with children with special health care needs (CSHCNs) will have completed the form prior to their appointment.

PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Task: Harriet (Care Coordinator) will assess portal account status of families with CSHCNs who are scheduled to be seen in August in our office. Those families without an activated account will be referred to our tech support staff member (Ernest) to do follow up and help them sign up for the portal and gain access. On July 15h, Harriet will send a secure email via the patient portal with the 1-page FCC Coordination Questionnaire (https://medicalhomes.aap.org/Documents/FamilyCenteredCareCoordination.pdf ) attached. Instructions to email the completed form back to her prior to the scheduled visit, using the portal’s secure email system or to fax it back to her attention or bring the completed form to the visit.

PLAN FOR COLLECTION OF DATA: WHO, WHAT, WHEN, WHERE Harriet will document and count how many emails were sent out by her via the portal. Of those how many completed questionnaires were returned via the portal email, the fax or returned at the time of the visit.






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https://medicalhomes.aap.org/Documents/FamilyCenteredCareCoordination.pdf







PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Task: Harriet (Care Coordinator) will assess portal account status of families with CSHCNs who are scheduled to be seen in August in our office. Those families without an activated account will be referred to our tech support staff member (Ernest) to do follow up and help them sign up for the portal and gain access. On July 15h, Harriet will send a secure email via the patient portal with the FCC Coordination Questionnaire (https://medicalhomes.aap.org/Documents/FamilyCenteredCareCoordination.pdf ) attached. Instructions to email the completed form back to her prior to the scheduled visit, using the portal’s secure email system or to fax it back to her attention or bring the completed form to the visit.




Harriet found that only about 50% of those families with CSHCNs have an activated patient portal account. Those without an active portal account were referred to Ernest for follow up. Emails were sent on July 15th by Harriet via the portal to all parents/caregivers with an activated account.

STUDY: COMPLETE ANALYSIS OF DATA; SUMMARIZE WHAT WAS LEARNED Of those families referred for follow up by Ernest, he reported that only 15% of those he contacted signed up and activated their portal account. Harriet will plan to meet with the QI team to discuss how to improve patient portal enrollment and to plan one or more tests of change with an aim to increase portal participation. Of those who received the email with the FCC questionnaire, 60% completed and returned the questionnaire via the secure email system, 10% faxed the form back prior to the appointment date and 10% brought the completed form to the visit.


Plan for next cycle: Need to increase patient portal enrollment and activation before conducting the next cycle.

For next cycle, Harriet will also ask parents/caregivers for feedback about the communication process and about the questionnaire.

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Objective for this PDSA Cycle (Aim): By July 31, 2016, our practice will routinely ask a set of questions to assess resilience of primary caregivers of our patients 0-3 yrs. old, as part of the well-child care (WCC) visit so we can better help them build their resilience and plan proactively how to respond to stressful parenting situations.

PLAN: QUESTIONS Can additional questions be integrated into the WCC visit?

How will they be documented in the patient’s record?

PREDICTIONS Questions will be verbally asked by Dr. Richards to at least 75% of the primary caregivers seen for a WCC visit tomorrow afternoon and documented in the patient records.

PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Completed Tasks: The 7 “Questions to ask” on the Strengthening Families’ “Parental Resilience: Action Sheet” (http://www.cssp.org/reform/strengtheningfamilies/about/body/ProtectiveFactorsActionSheets.pdf ) were reviewed by Parents/Caregivers who attended our June 15th Advisory Group meeting (PFAG). They reached consensus for Dr. Richards to test asking questions #4-6 at the initial visit. A smart set of those questions has been added to the EHR by Dr. Green. On Tuesday afternoon, Dr. Richards will test asking those questions to primary caregivers of patients 0-3 yrs. old being seen by him for a WCC visit.

PLAN FOR COLLECTION OF DATA: WHO, WHAT, WHEN, WHERE At the end of the afternoon, Joyce (MA) will tally the total # of patients 0-3 seen by Dr. Richards and the # of those with documentation that the “resilience” related questions were asked. The aggregate de-identified results also will be shared via email with the members of our PFAG.






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http://www.cssp.org/reform/strengtheningfamilies/about/body/ProtectiveFactorsActionSheets.pdf






PREDICTIONS Questions will be verbally asked by Dr. Richards to at least 75% of the primary caregivers seen for a WCC visit tomorrow afternoon and documented in the patient records .





Dr. Richards used the smart set questions as part of the appropriate WCC visits. He also took time to document the responses in the Notes section of the visit record. He felt it would be helpful information for future interactions with the family. He reported that the reaction from the parent of a 2-yrs. old was “why are you asking me these questions?” so he started prefacing his questions by saying that he is asking them to all parents/caregivers with a child 0-3 yrs. old.

STUDY: COMPLETE ANALYSIS OF DATA; SUMMARIZE WHAT WAS LEARNED All 5 of the primary caregivers seen by Dr. Richards this afternoon were asked the resilience questions during the visit (except 1 grandmother who was not the primary caregiver) = 100%. Dr. Richards shared that the patients/families he saw this afternoon did not have any special needs so asking the questions did not blow his schedule out of the water but he expressed concern about taking the time when that is not the case. Can someone else ask those questions or should we consider sharing these questions with the family prior to the scheduled appointment and asking them to write down their answers?


Plan for next cycle: PFAG members would like to get informal feedback from the primary caregivers at the end of the

visit. For Cycle 2, Alice (N Manager) will ask those parents/caregivers (before check-out) for feedback about those

questions they were asked and what else they may want/need (e.g., would they like information or help developing a plan in advance for how they will keep themselves calm and centered in these stressful circumstances).

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Objective for this PDSA Cycle (Aim): By July 31, 2016, our practice will invite at least 1 community-based organization (CBO) or state agency on our referral/resource list, such as Early Intervention (EI) to attend our monthly physician and staff meeting to help us better connect our families with appropriate supports and services, based on their needs.

PLAN: QUESTIONS Who should we invite first? Will a rep from the organization/agency be

willing/able to attend our meeting? Can we allot a half hour of our agenda for this purpose? Will it be useful for everyone or just physicians?

PREDICTIONS We can schedule a rep to attend our next meeting but it may be difficult because it is summer and people are on vacation. This opportunity to meet with a CBO or state agency we currently refer patients to will be useful for both physicians and staff members.

PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Our core team decided that Mary Jo (Nurse Manager) will contact the EI program tomorrow and invite someone to attend our monthly meeting in our office and give a brief 15-20 minute presentation about services and eligibility and be prepared to take 10-15 minutes of questions from the group.

PLAN FOR COLLECTION OF DATA: WHO, WHAT, WHEN, WHERE An evaluation form will be completed by each participant at the end of the meeting: Was it helpful/useful? Why or why not? How can we improve it next time? What organization/agency should be invited to our next meeting?






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Two representatives from the EI program our staff meeting on July 25th. Good questions were asked. There was some confusion among the physicians about the referral process. A lengthy discussion followed about how communication and information sharing by EI with our practice needs to be improved. The program manager left her card and encouraged the physicians and staff to call her in the future with any questions or concerns related to these issues.

STUDY: COMPLETE ANALYSIS OF DATA; SUMMARIZE WHAT WAS LEARNED All participants completed the evaluation form but it up took too much time. Overall, everyone thought the presentation and information shared was useful. The physicians especially liked the face-to-face interaction. Feedback included that next time 1 or more parents/caregivers who use or have used the services of the invited org/agency should be invited to attend that part of our meeting. Three physicians would like to learn more about the Family-to-Family Health Information Centers.


Plan for next cycle: There is no August meeting. Mary Jo will contact our state’s Family-to-Family Health Information

Center and invite them to attend our Sept. meeting. We will also identify 1 or more family(ies) who use the support and/or services that they offer and invite them to attend that portion of our meeting. Rather than collecting the evaluation/feedback on paper, we will test using Survey Monkey and send the URL via email to each meeting attendee after our next meeting.

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Objective for this PDSA Cycle (Aim): By July 1, 2016, our practice will test a care plan that includes elements needed by healthcare professionals, patients and parents/caregivers to ensure seamless planned care.

PLAN: QUESTIONS What elements can currently be populated from our EHR?

What elements do the physicians and other clinicians in our practice want included? What elements do patients and parents/caregivers want/need?

PREDICTIONS This will require an iterative process but, over time, we will be able to create a balance between the practice and patient/family needs (and not be >4-pages).

PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Tasks: By June 10th, Alice (N Manager) will export to Excel a list of all of the care plan elements included as possible choices in the NICHQ Care Plan Template which she downloaded from http://medicalhome.nichq.org/resources/chipra-care-plan-template. She will cross-walk it with data fields currently in our EHR. She will also share the file via email with all of the physicians and clinicians, as well as the 15 members of our Parent/Family Advisory Group, asking them by June 17th to place an “X” in the appropriate column for each element which is a “must include” and for each element viewed as a “could include.” Alice will tally the results to share with our core QI team, including our parent partner, when they meet on June 24thto identify the initial care plan elements to be included and tested by Dr. Green. On July 1, this initial care plan template will be tested by Dr. Green with the last patient with special healthcare needs he is scheduled to see that day.

PLAN FOR COLLECTION OF DATA: WHO, WHAT, WHEN, WHERE Feedback will be collected from Dr. Green about the ease in creating, sharing and reviewing the care plan with the patient/family. Feedback will also be collected from the patient and/or parent/caregiver about the usefulness of the information provided and ease in understanding the plan, based on format and organization. Both physician and parent/caregiver will be asked what else is needed or should be changed.






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http://medicalhome.nichq.org/resources/chipra-care-plan-template








PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Tasks: By June 10th, Alice (N Manager) will export to Excel a list of all of the care plan elements included as possible choices in the NICHQ Care Plan Template which she downloaded from http://medicalhome.nichq.org/resources/chipra-care-plan-template. She will cross-walk it with data fields currently in our EHR. She will also share the file via email with all of the physicians and clinicians, as well as the 15 members of our Parent/Family Advisory Group, asking them by June 17th to place an “X” in the appropriate column for each element which is a “must include” and for each element viewed as a “could include.” Alice will tally the results to share with our core QI team, including our parent partner, when they meet on June 24thto identify the initial care plan elements to be included and tested by Dr. Green. On July 1, this initial care plan template will be tested by Dr. Green with the last patient with special healthcare needs he is scheduled to see that day.




Tasks were completed as described in Plan. Dr. Green was able to create, print out, share and review the care plan with the last patient with special healthcare needs that he saw today. Many fields were populated with data from our EHR which was helpful but that did not include information recorded as a “Note.” It was “tested” with a 5 yrs. old child whose mom has been good advocate for her at her school. She reported that she likes the information about her child’s strengths and favorite activities but doesn’t like that it includes the fact that she has trouble paying for her daughter’s medications, since she shares this plan with the school nurse.

STUDY: COMPLETE ANALYSIS OF DATA; SUMMARIZE WHAT WAS LEARNED The feedback was shared with the QI team. Since the printed care plan was only 3 pages long, there is an opportunity to add some additional elements, preferably one or two “could include” that are already being collected in the EHR. The QI team is reconsidering including social risks which the physicians/clinicians wanted but not the parents/caregivers. Need to prioritize “must have” elements that currently require typing the information into the template, to see which could be created as data fields in the EHR that could then populate the care plan electronically.


PLAN FOR THE NEXT CYCLE: Care plan template was tweaked, to remove social risks and add list of “primary”

school team members and community-based providers engaged with the child/youth (daycare, Early Intervention, Head Start, transportation providers, etc.), and contact information. Dr. Green will test the use, sharing and review of care plan with patients/families with CSHCNs seen tomorrow and will gather and give feedback to the QI team. Findings of these cycles will also be shared and discussed at the full staff meeting next week.

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ADHD Attention-Deficit Hyperactivity DisorderRead. Ask Questions. Think. Decide.

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Typewritten Text

©2011, Cincinnati Children's Hospital Medical Center. All Rights Reserved.

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2

USING THIS BOOKLET TO HELPIf a doctor is evaluating your child for ADHD,

this booklet is for you. It gives you the facts about

ADHD and your treatment choices if your child is

diagnosed with ADHD. It also describes the possible

results of those choices.

Learn all you can so you can make your choice.

Share this booklet with your doctor and loved ones.

Talk to people you trust. Many parents have

learned about ADHD and have been better able to help

their child. You can too.

ASKQUESTIONS

DECIDE

THINK

READ

3

WHAT IS ATTENTION-DEFICIT/HYPERACTIVITY DISORDER (ADHD)?

ADHD is a problem with paying attention and/or

being hyper and acting without thinking first. Most

children have trouble sitting still. Many kids don’t

finish their schoolwork. Few children sit through meals

without tapping, kicking, or drumming. For these

problems to be diagnosed as ADHD, they must be out

of the normal range for the child’s age and development.

So how do you know what is normal and what is ADHD?

Only a doctor can tell you for sure. ADHD behavior doesn’t

happen in only one place, like at school. It may happen

every day in the classroom, on the playground, and at

home. ADHD can lead to problems with learning,

friendships, and family life. Parents of children with ADHD

are often worn out and frustrated.

4

WHAT DOES ADHD LOOK LIKE?It is normal for all children to have problems paying attention, being

hyper or acting without thinking sometimes. But for children with ADHD,

these behaviors are more severe and occur more often. To be diagnosed

with ADHD, a child must have more symptoms than other children their

age for 6 or more months.

Children who have problems paying attention may:· Be distractible, miss details, and forget things

· Often switch from one activity to the next

· Have a hard time focusing on one thing

· Become bored with a task after only a few minutes,

unless they are doing something enjoyable

· Have a hard time planning and completing a task or

learning something new

· Have trouble completing or turning in homework

· Often lose things (e.g., pencils, toys, homework) needed

to complete tasks or activities

· Not seem to listen when spoken to

· Daydream, become easily confused, and move slowly

· Have a hard time thinking as quickly and precisely as others

· Struggle to follow instructions

Children who are hyper may:· Fidget and squirm in their seats

· Talk nonstop

· Dash around, touching or playing with everything in sight

· Have trouble sitting still during dinner, school, and story time

· Be constantly moving

· Have a hard time doing quiet tasks or activities

Children who act without thinking first may:· Be very impatient

· Blurt out inappropriate comments

· Show their emotions without restraint

· Act without regard for consequences

· Have difficulty waiting for things they want or waiting

their turns in games

· Often interrupt when other people are talking or

doing something else

5

HOW IS ADHD DIAGNOSED? Deciding if a child has ADHD is based on how they act. ADHD behavior

must be seen at home and at school. Children should be assessed if a

parent or teacher thinks the child has a problem. Assessment may include:

· Parent and teacher questionnaires (Vanderbilt, Conners)

· Psychological testing of the child AND family

(e.g., IQ testing and psychological testing)

· Doctors may ask about the child’s growth

and development

ARE THERE DIFFERENT TYPES OF ADHD?There are three different types of ADHD. Your child’s doctor will decide

which diagnosis fits your child’s symptoms.

· ADHD-Inattentive Type: Children who have trouble paying

attention, but are not very hyper and don’t have problems

acting without thinking first. This type of ADHD used to be

called ADD.

· ADHD-Hyperactive/Impulsive Type: Children who are very

hyper and have problems acting without thinking first, but

have few problems paying attention.

· ADHD-Combined Type: Children who have problems paying

attention, being hyper, and acting without thinking first.

DO CHILDREN ‘OUTGROW’ ADHD?Many people think of ADHD as a childhood problem. However, ADHD

can continue through the teen years and into adulthood. Symptoms

of ADHD do change over time.

Hyperactivity is often seen in very young children. The hyperactive

symptoms often decrease over time with or without treatment.

Children’s tendency to act without thinking because of ADHD gets

better over time. This problem is often replaced by a tendency to talk

without thinking.

Trouble paying attention may not get noticed until demands at school

increase. These problems often continue in the teen and adult years.

Using routines, study skills, and coping strategies can help people with

these problems.

6

HOW DO YOU KNOW FOR SURE IF ADHD IS THE PROBLEM?There are no tests for ADHD. Your child’s doctor may make a

diagnosis. Or sometimes the doctor may refer you to an expert

to assist with diagnosis.

Doctors need information from home and school to make the

diagnosis. They ask parents and children questions and examine

the children to make sure there aren’t other problems.

Doctors often ask parents and teachers to report the behaviors

that they have seen. Some doctors use the “Vanderbilt” form,

while other doctors use the “Conners” form. These forms are very

similar. The information that parents and teachers report on these

forms is very helpful. All children have trouble paying attention

sometimes. All children are hyper or act without thinking sometimes.

But when school-age children behave this way often or always, it

can cause problems at home and at school.

Doctors like to have parents and teachers fill out these forms

at least once a year. This can help determine if a child’s problems

are getting better or worse.

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DO OTHER PROBLEMS OCCUR ALONG WITH ADHD?Some children will have more than just ADHD.

· Learning Disabilities: Many children with ADHD – up to 30 percent –

also have a specific learning disability. This can cause problems with reading,

writing, spelling, or math.

· Oppositional Defiant Disorder (ODD): As many as 33 percent of

children with ADHD will have this. These children are defiant and stubborn.

They have temper outbursts or become loud-mouthed. They argue with

adults and refuse to obey.

· Conduct Disorder: As many as 33 percent of children who have both

ADHD and ODD will develop conduct disorder. This is a more severe

pattern of antisocial actions. These children frequently lie or steal. They

fight or bully others. They are at risk of getting into trouble at school

or with the police. They are aggressive toward people and/or animals.

They destroy property. They break into people’s homes. They carry

or use weapons. As teens, they are at greater risk of substance abuse.

They need immediate help.

· Anxiety and Depression: About 25 percent of children with ADHD

also are anxious or depressed. These problems can be treated. Treating

ADHD may help these problems get better. Likewise, treating anxiety

or depression may help ADHD get better.

· Tic Disorders: Children may have eye blinks or facial twitches. They may

clear their throats frequently, snort, sniff, or bark out words. They cannot

control these behaviors. The most severe form of tics is Tourette’s disorder.

Very few children have this disorder.

The evaluation process helps find out whether something besides ADHD is

the problem. ADHD is very common and has the most established treatments.

If your child does not respond well to treatment, other evaluations may

be needed. Even if your child responds well to treatment, other problems may

develop over time.

8

SOME THINGS TO CONSIDER WHEN

DECIDING ON TREATMENTS:

· Every child is different. You know your child

better than anyone else. As a parent, trust your

thoughts and feelings.

· Balance possible benefits with side effects,

cost, and time.

· Discuss treatment options with your child’s doctor.

Gather as much information as you need to make a

decision that is right for you and your child.

· Track and monitor your child’s progress. Realize

that your decisions may change over time as your

child’s needs change.

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WHAT ARE ADHD TREATMENT OPTIONS?Every effort should be made to manage symptoms and direct the

child to helpful paths. There are four treatment options to consider.

· Watchful Waiting

· Behavioral Treatment

· Medicine

· Combined Treatment (BOTH Behavioral Treatment AND

Medicine)

WHAT DOES THE BEST RESEARCH SAY TO DO?It is still not clear. Here’s why:

A study called “The Multimodal Treatment Study of Children with

ADHD” (MTA) showed that behavioral treatment, medicine, and

combined treatment all help some children with ADHD. The results

of this study will be shared with you throughout this booklet. Still,

it is impossible to predict how your child will respond because every

child is unique. The only way to find out if a treatment will

help your child for sure is by trying it.

10

WATCHFUL WAITING

Watchful waiting means that you do not start active treatment yet.

You and your child’s doctor watch your child to see how he or she

performs at home and school. If you become worried by your child’s

struggles, you can always start active treatment.

PROS & CONS How can this treatment help my child?

· You do not have to deal with the possible side effects from medicine.

· You can always change your mind and begin active treatment.

· It is low in cost (i.e. time, money).

What are possible problems with this treatment? · Your child’s struggles at home and school will likely continue or get worse.

HERE IS AN EXAMPLE OF HOW CHOICES ABOUT TREATMENT CAN CHANGE OVER TIME:Jane’s parents first met with the doctor to discuss treatment options.

Jane’s father did not think they needed to take action to help manage her

problems paying attention. He closely watched Jane’s behavior at home

and at school over the next month. Seeing that her struggles were continuing,

he decided to return to Jane’s doctor’s office to discuss treatment options.

11

Behavioral treatment is an active treatment where parents and teachers learn methods to

help children with ADHD.

TYPES OF ADHD BEHAVIORAL TREATMENTChildren with ADHD have different needs than other children. As a result,

different methods are needed to help them do their best. Parents and teachers

can learn methods to help children with ADHD.

Three types of methods have been proven to improve performance at school and at home:

· Methods for parents to use at home

· Methods for teachers and parents to use to improve classroom performance

· Methods to improve peer relations in classroom and play settings

It is possible to learn about these methods by: · Taking a class with a group of parents led by a counselor

· Working one-on-one with a clinical counselor

· Working with your child’s teacher and/or school counselor

· Reading about these approaches on your own

Learning these methods takes time and costs money. Therefore, it is important

to focus on the methods that are proven to work for children with ADHD. Proven

methods are described on the next few pages.

BEHAVIORAL TREATMENT

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METHODS FOR PARENTS TO USE AT HOME How does this help? Parents learn how to manage their child’s problems caused by ADHD.

For example, parents can learn to give better commands, set small

goals, and use time-outs, reward systems, and point systems. This shows

parents how to help their child with ADHD to behave better. Because

the focus is on the child’s behavior, these methods are also called

“behavior therapy” or “behavior modification.” Unlike other therapies

you may have heard about, this does not mean talking with the child

about how they feel. Rather, counselors help parents learn practical

ways to help their child behave better.

What is usually involved? In studies where this helped, parents learned these methods in groups

with other parents. The groups met between 8 and 16 times. In addition

to learning new skills, parents often get support from being in a group

with other parents of children with ADHD.

What is available nearby? “Understanding and Managing ADHD: A Group Program for Parents

of Children Aged 6-12.” Cincinnati Children’s Hospital offers parent groups

at several places. The groups have 8 weekly sessions. Parents learn about

ADHD, how to manage child behavior, and how to work with teachers and

doctors to help their child. For more information, call (513) 636-4336 and

press the pound key (#) option or visit: http://www.cincinnatichildrens.org/

svc/alpha/b/behavioral-psych/clinical/group/default.htm

Also, your child’s doctor may be able to refer you to a local psychologist.

They are trained to help you learn ways to manage your child’s behavior.

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What can I read to learn more about this on my own?· Taking Charge of ADHD: The Complete, Authoritative Guide for Parents

By Russell Barkley PhD

This is a book for parents of elementary-aged children with ADHD.

· ADHD in the Young Child

By Cathy Reimers, PhD, and Bruce A. Brunger

This is an excellent book for parents of children 5 and under.

· Teenagers with ADD and ADHD: A Guide for Parents and Professionals

By Chris A. Zeigler Dendy, MS

This is a book for parents of teenagers with ADHD.

What other things can I do now?Here are a few other resources that may be helpful:

· The website for Children and Adults with Attention-Deficit/

Hyperactivity Disorder (CHADD) offers advice and support for parents.

– www.chadd.org

· The series “Supernanny” has three shows that deal with children who

have ADHD. Families in these shows learn methods that help them

manage their child better. Watching these shows or reading the episode

guides (links shown) may provide helpful thoughts on how to work with

your ADHD child.

– Season 3, Episode 12: The Goins Family, originally aired 2/2/2007

http://www.Supernanny.com/tv-show/episodes/the-goins-family.aspx

– Season 4, Episode 9: The Prescott Family, originally aired 3/5/2008

http://www.Supernanny.com/tv-show/episodes/the-Prescott-family.aspx

– Season 6, Episode 6: The Beck Family, originally aired 12/11/2009

http://www.Supernanny.com/tv-show/episodes/the-beck-family.aspx

· The “Supernanny” website also provides advice on ADHD.

– http://www.supernanny.com/Advice/-/Your-child/-/Child-care/

Helping-your-ADHD-child-to-behave-.aspx

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METHODS FOR TEACHERS AND PARENTS TO USE TO IMPROVE CLASSROOM PERFORMANCE How does this help?Teachers can use many of the same methods as parents to help children

behave in class (e.g. set small goals, use time-outs, reward systems, and point

systems). Daily Report Cards are often used to change behavior in class.

They provide a way for teachers and parents to better communicate about

progress toward goals. Classroom aides or tutors help children with

organization and study skills.

What is usually involved?In studies where this helped, teachers and classroom aides and tutors received

formal training on methods that are helpful for children with ADHD. This

was important because many teachers receive no formal education about ADHD

during their training. There are key differences in the types of methods that

work best for children with ADHD compared to those without ADHD.

What is available nearby?There are no programs nearby that will go to your child’s school and

work with your child’s teacher. The parent groups (described before) offered

by Cincinnati Children’s Hospital do include advice about how to work

better with your child’s teacher. This includes how to use a daily report card,

how to tailor classroom methods for children with ADHD, and how to

request aid for your child. For more information, call (513) 636-4336 and

press the pound key (#) or visit: http://www.cincinnatichildrens.org/

svc/alpha/b/behavioral-psych/clinical/group/default.htm

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What can I read to learn more about this on my own?· Taking Charge of ADHD: The Complete, Authoritative Guide for Parents

By Russell Barkley PhD

· ADHD in the Young Child

By Cathy Reimers, PhD, and Bruce A. Brunger

· The ADD/ADHD Checklist: An Easy Reference for Parents and Teachers.

By Sandra Reif

· Teaching Teens with ADD and ADHD

By Chris A. Zeigler Dendy, MS

This is a resource for parents and teachers of students with ADHD

in the middle and high school years.

What other things can I do now?Here are a few other resources that may be helpful:

· The Center for Children & Families at the University of Buffalo

offers many online resources to parents and teachers of

children with ADHD.

– http://ccf.buffalo.edu/default.php

– Some that are of particular interest are:

· Creating a Daily Report Card for the Home

http://ccf.buffalo.edu/pdf/Home_Daily_Report_Card.pdf

· How to Establish a Daily Report Card (Home-School Note)

http://ccf.buffalo.edu/pdf/school_daily_report_card.pdf

· The website “Parents Helping Parents” offers a sample letter

to request further educational testing be done at school.

– http://www.php.com/specialed/story2

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METHODS TO IMPROVE PEER RELATIONS IN CLASSROOM AND PLAY SETTINGS How does this help?Children learn how to more effectively interact with and relate to their peers

(e.g. social skills training). This helps children make and improve friendships

with their peers in classroom and play settings. Teachers and counselors use goal

setting, reward systems, point systems, and daily report cards. Children practice

social skills in the classroom, in team sports, and in other activities. The staff

works with parents to develop daily goals for each child. If the child achieves his

or her goal, the parent provides rewards at home.

What is usually involved?In studies where this helped, children typically attended a Summer Treatment

Program that lasted all day for 5 to 8 weeks. It is important to know that

social skills programs that meet once or twice a week at a clinic are not as helpful

as the summer programs that work with children in real world settings.

What is available nearby?There are no programs nearby that work with children in classroom and

play settings. The most well known summer treatment program is located in

Buffalo, New York (http://ccf.buffalo.edu/STP.php).

The two closest programs to Cincinnati are:

· Cleveland: www.clevelandclinic.org/STP.

· Chicago: www.jcys.org/campstar/

What can I read to learn more about this on my own?· Why Don’t They Like Me? Helping Your Child Make and Keep Friends

By Susan M. Sheridan, PhD

This is great book for parents of children with peer difficulties. The

methods Dr. Sheridan describes are similar to those taught in Summer

Treatment Programs for children with ADHD.

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PROS & CONSHow can this treatment help my child?

· Behavioral treatment alone will help about one-third of children with ADHD. These

children will pay attention and control their impulses as well as the average child

their age that does not have ADHD. They also will be less hyper. Other children may

find behavioral treatment helpful without the same high level of success.

· You do not have to deal with the possible side effects from medicine.

· You can always change your mind and try medicine also.

Here is our best guess of what will happen to 100 children with ADHD if they

get behavioral treatment alone (with all 3 types described before) for 14 months.

What are possible problems with this treatment?

· Behavioral treatments take time for parents, teachers, and children to do.

· Formal programs may be limited nearby. There may be a wait list to access

the programs that are available.

· Behavioral treatments cost money (to you and/or your insurance plan).

IF YOU CHOOSE BEHAVIORAL TREATMENT:· Continuing behavioral treatment: The first step is learning methods to help

your child manage his or her behavior. Next, you need to use these methods

regularly. These methods will become part of your parenting skills. You may

need to refresh these skills through reading and/or meeting with professionals.

· Behavioral treatment changes: Certain methods may work for a while and

then stop working. You may need to learn different methods. It is very important

for you and your child’s teacher to keep a close eye on how things are going.

Contact your child’s doctor if any problems come up.

HERE IS AN EXAMPLE OF HOW CHOICES ABOUT TREATMENT CAN CHANGE OVER TIME:Erik’s mom used a reward system at home over the summer to help him complete tasks.

She noticed that he struggled with task completion when he started back to school. She

met with his teacher and they developed a daily behavioral report card.

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Number who have self-control and focus as well as the average child their age who doesn’t have ADHD

Number who don’t improve to that level

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Medication treatment is an active treatment that uses drug therapy to control ADHD

symptoms.

HOW DOES MEDICINE FOR ADHD WORK?These pictures show what the brain looks like when a child pays attention.

The yellow box shows the parts of the brain that are needed for attention.

Medicine for ADHD works by helping the brain send messages to these parts of the brain.

This helps children pay attention.

WHAT HAPPENS IF WE TRY MEDICINE?Unlike other medicines, the right amount of ADHD medicine is not based only on your

child’s weight. Instead, you must work with your child’s doctor to try a range of doses

(lower, medium, higher) and see how your child responds. You and your child’s teacher

will need to watch your child closely and complete evaluation forms. You will also need

to stay in close contact with the doctor’s office through follow-up calls and visits.

Here is our best guess of what will happen to 100 children with ADHD who try

3 different amounts of methylphenidate-based medicine.

77 CHILDREN FIND A DOSAGE THAT HELPS

MEDICATION

22 Children do best on the lower dosage

25 Children do best on the medium dosage

30 Children do best on the higher dosage

23 Children do NOT improve About half of these children will improve when they try an amphetamine-based medicine (e.g. Adderall, etc.)

77 CHILDREN FIND A DOSAGE

THAT HELPS

CHILDREN WITH ADHDNO MEDICATION

CHILDREN WITH ADHDWITH MEDICATIONWith medicine, children with ADHD have more activity in the parts of the brain that help them focus.

CHILDREN WITHOUT ADHDChildren without ADHD have more activity in the parts of the brain that help them focus.

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TYPES OF ADHD MEDICATIONThere are two types of medicines that can be used. They are called stimulants and non-

stimulants.

Stimulant medicines are often tried first. In studies, more children benefit from stimulant

medicines than non-stimulant medicines. On average, stimulants reduce ADHD symptoms

better than non-stimulant medicines.

Among the different stimulant medicines available, some children do better on a

methylphenidate-based medicine. Others do better on an amphetamine-based medicine.

Some children do equally well on both. Others don’t respond to either.

Bottom-line: Each child is unique. At present, there is no way to predict which medicine

will work best for your child. Your child’s doctor can tell you about the differences

between medications. He or she can help you pick a medicine to try first, and work with

you to find a dose that is best for your child.

PROS & CONSHow can this treatment help my child?

· Medicine alone will help about half of children with ADHD. These children will pay

attention and control their impulses as well as the average child their age that does

not have ADHD. They also will be less hyper. Other children may find medicine

helpful without the same high level of success.· You can always change your mind

and try behavior therapy also.

Here is our best guess of what will happen to 100 children with ADHD if they get

medication treatment alone for 14 months.

What are possible problems with this treatment?

· Medicine must be taken, or it will not work.

· Medicine costs money (to you and/or your insurance plan).

· Your child may have side effects. These are usually minor. Side effects will

often decrease as a child gets used to the medicine. Other side effects

can persist. Taking less medicine often relieves these. Sometimes switching

to a different medicine is needed.

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SIDE EFFECTS OF STIMULANT MEDICINESMost common side effects:

· Decreased appetite (this is usually worst at lunchtime)

· Trouble falling asleep

· Stomach aches

· Headaches

· Increased crabbiness

· Social withdrawal (i.e. they look like a ‘zombie,’ they are not interested

in normal activities): This is a sign that the child is taking too much medicine.

The amount needs to be lowered.

· Increased anxiety and/or crying over little things

· Rebound: Some children are more active or get in a bad mood when

the medicine is wearing off

Less common side effects: Tics (i.e. muscle twitches, movements, or unusual vocal sounds that a child can’t

control). Medicine does not cause tics, but may make them more likely to happen.

In general, tics are more likely in children with ADHD. In children who have tics

and start medicine for ADHD, tics may get better, worse, or stay about the same.

Rare side effects: · Increased heart rate and/or blood pressure

· Growth suppression/delay: On average, children with ADHD who take

medicine grow less than those children with ADHD who do not take medicine.

In the MTA study, some children took medicine for ADHD regularly for 3

years. Other children did not take medicine for 3 years. The children who took

medicine were 0.8 inches shorter. They were also about 0.9 pounds lighter.

This problem is more likely if the medicine makes your child feel less hungry.

Height and weight are checked at every doctor’s visit. We still do not know

if there is catch-up growth during adolescence.

· Hallucinations (i.e., seeing or hearing something that is not real): This

happens in about 3 out of 100 children who take medicine for a year. When

the medicine is stopped the hallucination goes away. Some children can

re-start a lower amount of medicine without a problem. Some children need

to try a different medicine.

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36 Children have no side effects

50 Children have mild side effects: usually do not trouble the child or their parents enough to stop or change the medicine or dosage

11 Children have moderate side effects: troubling enough to adjust treatment

3 Children have severe side effects: troubling enough to adjust treatment

Children with pre-existing heart problems: Children who have heart problems may need to see a heart doctor before trying

medicine for ADHD. At present, there is no proof to suggest that taking medicine for

ADHD raises the risk of sudden death among children with a normal heart.

· Does your child have a history of heart disease, palpitations (feeling his

or her heart flutter), passing out, or seizures?

· Does anyone in your family have a history of sudden, unexplained death

in children or young adults? Hypertrophic cardiomyopathy? Heart rhythm

abnormality (e.g. Long QT syndrome)?

· If so, be sure to mention these things to your child’s doctor.

Here is our best guess of what will happen to 100 children with ADHD who take

medicine for 14 months:

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IF YOU CHOOSE MEDICATION:Continuing medication: The first step is working with your child’s doctor to find a medicine and dose that

works. It should help your child without causing troubling side effects. Next, your child

has to continue taking medicine for it to work. If your child is taking a stimulant

medicine (e.g. methylphenidate, amphetamine), you will need to come to the doctor’s

office every month to pick up a refill. Let your child’s doctor know how things are going.

It is important to have regular follow-up visits with your child’s doctor. They will check

your child’s growth (i.e. height and weight). They will also check your child’s heart rate

and blood pressure. They might make changes to the medicine.

Medication changes: Even if you find a medicine and amount that works for your child, things can change

over time. You and your child’s teacher need to keep a close eye on how things are

going. Call your child’s doctor if problems arise. Sometimes the medicine stops working

as well as it did before. Sometimes children start having side effects.

Many children change the amount or type of medicine within 14 months of treatment.

Here is our best guess of what will happen to 100 children with ADHD who have

a good response to an ADHD medicine and keep taking it.

The average time to first medicine change is about 5 months.

The average number of medicine changes is 2 per child.

HERE IS AN EXAMPLE OF HOW CHOICES ABOUT TREATMENT CAN CHANGE OVER TIME: After trying 3 different doses of medicine, the medium dose seemed to work

best for Beth. After a few months her mother noticed that Beth was putting off

doing her homework and forgetting to turn in her homework. These were the

same problems that Beth had before starting medicine. After meeting with Beth’s

doctor, they decided to try a higher dose of the same medicine.

29 Children on same medicine and dose because medicine is still working well

18 Children change to lower dose because they start having troubling side effects

41 Children change to higher dose because the dose isn’t helping as much as before

12 Children change to a different medicine because it isn’t helping and/or they start having new side effects

25

Combined treatment means the child gets both behavioral and medication treatments.

See prior sections which describe behavioral treatment and medicine.

PROS & CONS How can this treatment help my child?

· Combined treatment will help about two-thirds of children with ADHD. These

children will pay attention and control their impulses as well as the average child

their age that does not have ADHD. They also will be less hyper. Other children may

find combined treatment helpful without the same high level of success.

· Compared to children who only take medicine, children who get combined

treatment need 19% less medicine to improve the same amount. As a result,

side effects may be less severe on lower amounts of medicine.

Here is our best guess of what will happen to 100 children with ADHD if they get both

behavioral and medication treatments for 14 months.

What are possible problems with this treatment?· Behavioral treatments take time.

· Behavioral treatments and medicine cost money

(to you and/or your insurance plan).

· Your child may have side effects from medicine.

HERE IS AN EXAMPLE OF HOW CHOICES ABOUT TREATMENT CAN CHANGE OVER TIME:David was taking medicine for ADHD, but still had problems behaving at

home. David’s parents decided to try combined treatment. The doctor gave

them the phone number to a parenting class that was offered in their

town. The next month, David continued taking his medicine and his parents

went to their first parenting class.

COMBINED TREATMENT

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COMPARING TREATMENT CHOICESHere is our best guess of what will happen to 100 children with ADHD

if they get the following treatments for 14 months.

BEHAVIOR THERAPY

34child their age who doesn’t have ADHD

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BEHAVIOR THERAPY MEDICATION COMBINED TREATMENT

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SOME CONSIDERATIONS REGARDING YOUR DECISION

Ongoing monitoring

· No matter what treatment you try, it is important

to keep a close eye on your child’s progress.

· You and your child’s teacher can fill out rating forms

(e.g. Vanderbilt, Conners, etc.) to see if symptoms are

getting better.

· Think about the goals that you, your child,

and your child’s teacher and doctor set.

· Meet with your child’s teacher and doctor to see

if your goals have been achieved.

· If a treatment goal is not achieved by a set

date, the treatment plan may need to be adjusted.

This may include adjusting a current treatment

(e.g. behavioral approach or medicine) or adding

a new approach that you haven’t tried yet (e.g.

behavioral approaches or medicine).

29

HERE ARE EXAMPLES OF HOW CHOICES ABOUT TREATMENT CAN CHANGE OVER TIME:Example 1: Johnny’s behavior improved after his mom started using

a reward system at home. He still had a very hard time paying attention

at school. As a result, she decided to give medicine a try.

Example 2: Vicky’s parents were pleased with the progress that she made

at school since starting medicine. They were still concerned about her

defiant behavior at home. As a result, they decided to attend a class designed

to help parents manage their child’s behavior.

Example 3: Albert was started on ADHD medicine when he was 7 years

of age. Albert also learned study skills that helped him. Each year, Albert and

his parents would meet with his doctor. They would plan a trial without

medicine to see if he still benefited from it. In the first year, Albert’s teacher

and parents knew that medicine was still needed to help Albert achieve

his goals. In later years, the trials off medicine lasted longer. Yet, Albert and

his parents still found that medicine was helpful for him. During a trial off

medicine when he was 15, using his study skills alone he was able to keep his

good grades. He remained off medicine. Since then, his parents and teachers have

continued to set goals and watch his progress closely.

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FREQUENTLY ASKED QUESTIONS (1) Will my child outgrow ADHD?Many people think of ADHD as a childhood problem. However, ADHD can continue

through the teen years and into adulthood. Symptoms of ADHD do change over time.

(2) How do you know for sure if ADHD is the problem?There are no tests for ADHD. Your child’s doctor may make a diagnosis. Sometimes

the doctor may refer you to an expert to assist with diagnosis.

(3) What causes ADHD?No one knows for sure. ADHD probably comes from a combination of things.

Some possibilities are:

· Genes, because ADHD sometimes runs in families

· Lead in old paint and plumbing parts

· Smoking and drinking alcohol while pregnant

· Certain brain injuries

Food additives like artificial colors might make children more hyper, but they do not

cause ADHD.

Although the cause of ADHD is not certain, family stress, such as divorce,

does not cause ADHD.

(4) Who can develop ADHD?Children of all backgrounds can have ADHD. Teens and adults can have ADHD too.

(5) Will medication change my child’s personality? While your child may stop and think before talking or acting, his or her personality

should not change. If your child loses interest in the things he or she enjoys, he or she

may be on a dose that is too high.

(6) Will my child become addicted to the medication? Children do not crave the medicine when it is not given. Some children do notice

that it is harder to focus on days that they don’t take their medicine.

(7) Are there other resources to help me make the best choice for my child?See the Resources listed on the next page.

(8) Are there behavioral options nearby?Cincinnati Children’s Hospital Medical Center offers parent groups at several places.

The groups have 8 weekly meetings. Parents learn about ADHD, how to manage child

behavior, and how to work with teachers and doctors to help their child.

For more information, call (513) 636-4336 and press the pound key (#) option

or visit http://www.cincinnatichildrens.org/svc/alpha/b/behavioral-psych/

clinical/group/default.htm

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RESOURCESThis list provides support groups and other resources for ADHD.

Check with your child’s doctor for other resources near you.

Organizations· Cincinnati Children’s Hospital Center for ADHD

513.636.4336 · www.cincinnatichildrens.org/svc/alpha/a/adhd/

· Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)800.233.4050 · www.chadd.org

· National Resource Center for ADHD: A program of CHADDwww.help4adhd.org

· National Attention Deficit Disorder Association 856.439.9099 · www.add.org

· National Dissemination Center for Children with Disabilities 800.695.0285 · www.nichcy.org

· National Institute of Mental Health866.615.6464 · www.nimh.nih.gov

· The Center for Children & Families at the University of Buffalohttp://ccf.buffalo.edu/default.php

· Parents Helping Parentswww.php.com

Books· Taking Charge of ADHD: The Complete, Authoritative Guide for Parents

By: Russell Barkley, Ph.D.

· ADHD in the Young ChildBy: Cathy Reimers, Ph.D. & Bruce A. Brunger

· Teenagers with ADD and ADHD: A Guide for Parents and ProfessionalsBy: Chris A. Zeigler Dendy, MS

· The ADD/ADHD Checklist: An Easy Reference for Parents and TeachersBy: Sandra Reif

· Teaching Teens with ADD & ADHDBy: Chris A. Zeigler Dendy, MS

· Why Don’t They Like Me? Helping Your Child Make and Keep Friends

By: Susan M. Sheridan, Ph.D.

Technical Documentation· For complete list of citations to scientific evidence referenced in this booklet, please email [email protected]


Updated: 04/20/2011

These cards will help you and your child set goals for treatment. It provides an overview of treatment options available to you.

The booklet lists more information on treatment options. The booklet also lists resources available to you. The booklet will help you to determine if your child reaches the goals you set in these cards.

Share these cards with your child’s doctor. Talk with the doctor about your goals and work together to make a treatment plan.

Even if you choose to let the doctor decide what treatment(s) to give your child for ADHD, you need to be well informed and monitor progress toward your goals.

If a doctor is evaluating your child for ADHD, these cards are for you.


Updated: 04/19/2011

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· Your child’s struggles at home and school will likely continue or get worse.

DOWNSIDES

You do not have to deal with the possible side effects from medicine. You can always change your mind and begin active treatment.

It is low in cost (i.e. time, money).

BENEFIT

Watchful waiting means that you do not start active treatment yet.

INTRODUCTION

You and your child’s doctor watch your child to see how he or she performs at home and school.

If you become worried by your child’s struggles, you can start active treatment at any time.

1. WATCHFUL WAITING

Updated: 04/19/2011

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Behavioral treatment is an active treatment where parents and teachers can learn methods to help children with ADHD. Three types of methods have been proven to improve performance at school and at home:

Methods for parents to use at homeIn studies where this helped, parents met in groups with other parents. Parents learn how to manage their child’s problems caused by ADHD. They learn how to give better commands, set small goals, and use time-outs, reward systems, and point systems. The groups meet between 8 and 16 times. Parents often get support from being in a group with other parents of children with ADHD.

Methods for teachers and parents to use to improve classroom performanceTeachers can use many of the same methods as parents to help children behave in class (e.g. setting small goals, using time-outs, reward systems, and point systems). In studies where this helped, teachers, classroom aides, and

tutors received formal training on methods that are helpful for children with ADHD. This was important because many teachers receive no formal education about ADHD during their training. There are key differences in the types of methods that work best for children with ADHD compared to those without ADHD.

Methods to improve peer relations in classroom and play settingsChildren learn how to more effectively interact with and relate to their peers (e.g. social skills training). This helps children make and improve friendships with their peers in classroom and play settings. In studies where this helped, children attended a Summer Treatment Program that lasted all day for 5 to 8 weeks. It is important to know that social skills programs that meet once or twice a week at a clinic or hospital are not as helpful as the summer programs that work with children in real world settings.

INTRODUCTION

· Behavioral treatments take time for parents, teachers, and children to do. · Formal programs may be limited nearby. There may be a wait list to access the

programs that are available.

· Behavioral treatments cost money (to you and/or your insurance plan).

DOWNSIDES

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Here is our best guess of what will happen to 100 children with ADHD if they get behavioral treatment alone for 14 months.

BENEFIT

2.BEHAVIORAL TREATMENT



Updated: 04/19/2011

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· Medicine costs money. · Your child may have side effects. These are usually minor and decrease as a child gets used to the medicine. Side effects of stimulant medicines include:

· Most common: Decreased appetite, trouble falling asleep, stomach aches, headaches, increased crabbiness, social withdrawal, anxiety and/or

crying. Some children are more active or get in a bad mood when the medicine is wearing off.

· Less common: Tics (i.e. muscle twitches, movements, or unusual vocal sounds that a child can’t control).

· Rare: Increased heart rate and/or blood pressure, growth delay, hallucinations.

Talk with your doctor to discuss these side effects in more detail.

DOWNSIDES

Medication treatment is an active treatment that uses drug therapy to control ADHD symptoms.

Parts of the brain help children pay attention. Medicine for ADHD works by helping the brain send messages to these parts of the brain. This helps children to pay attention.

There are two types of medicines that can be used. One type is called stimulants and the second is called non-stimulants. Stimulant medicines are often tried first. In studies, more children benefit from

stimulant medicines than non-stimulant medicines.

Unlike other medicines, the right amount of ADHD medicine is not based only on your child’s weight. Instead, you must work with your child’s doctor to try a range of doses (lower, medium, higher) and see how your child responds. You and your child’s teacher will need to watch your child closely and complete evaluation forms. You will also need to stay in close contact with the doctor’s office through follow-up calls and visits.

INTRODUCTION

Here is our best guess of what will happen to 100 children with ADHD if they get medication treatment alone for 14 months.

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BENEFIT

3. MEDICATION TREATMENT



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INTRODUCTION

Combined treatment means the child gets both behavioral and medication treatments. See prior sections which describe behavioral and medication treatments.

Compared to children who only take medicine, children who get combined treatment need 19% less medicine to improve the same amount. As a result, side effects may be less severe on lower amounts of medicine.

DOWNSIDES

Here is our best guess of what will happen to 100 children with ADHD if they get both behavioral and medication treatments for 14 months.

BENEFIT

· Behavioral treatments take time.· Behavioral treatments and medicine cost · money.· Your child may have side effects from · medicine.

4. COMBINED TREATMENT



Updated: 04/19/2011

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IF YOU ARE INTERESTED IN TRYING WATCHFUL WAITING…

What would you like to see change? __________________________________________________ ____________________________________________________________________________________ ____________________________________________________________________________________

What would your child like to see change? ___________________________________________ ____________________________________________________________________________________ ____________________________________________________________________________________

To get started, please complete the following sentences regarding you and your child’s treatment goals.

You do not have to deal with the possible side effects from medicine. You can always change your mind and begin active treatment.

What problems or behaviors will you watch for? _______________________________________

____________________________________________________________________________________

How do you know when to try an active treatment? ___________________________________

____________________________________________________________________________________

Please answer the following questions about pre-existing heart problems.

What do you like most and least about each treatment option?

Does your child have a history of…

Heart disease?................... Yes No

Palpitations or feeling

his/her heart flutter?..

Passing out?...................... Yes No

Seizures?........................... Yes No

Does anyone in your family have a history of...

Sudden death in children

or young adults?........... Yes No

Hypertrophic

Cardiomyopathy?..........

Long QT syndrome?............ Yes No

Please fill out the box below

Please fill out the orange card (behavioral treatment)

Please fill out the blue card (medication treatment)

Please check all the options you want to discuss with your child’s doctor.

WATCHFUL WAITING

Watchful waiting

Try a behavioral treatment

Try a medication treatment

Most Least

Watchful Waiting ___________________________ ______________________________

Behavioral Treatment ___________________________ ______________________________

Medication Treatment ___________________________ ______________________________

Combined Treatment ___________________________ ______________________________

Yes No

Yes No

PLEASE REMEMBER TO FILL OUT THIS WORKSHEET AND BRING IT TO YOUR CHILD’S NEXT APPOINTMENT.

GOALS / PREFERENCES

Updated: 04/19/2011

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IF YOU ARE INTERESTED IN TRYING BEHAVIORAL TREATMENT…

In order to decide which behavioral options to try, it may help your child’s doctor to know what you’ve done in the past and what you are doing now. Please think about methods you’ve done and answer these questions.

What behavioral methods…... have you

tried in the past

... are you currently trying

… are you interested in trying next

Methods for teachers & parents to use to improve classroom performance:

Seat child in front of class near the board.

Utilize a daily report card for teacher to communicate with parents.

Meet with your child’s teacher to set goals and develop a plan.

Request in writing that child’s school tests for learning disabilities.

Other: _________________________________

What behavioral methods…... have you

tried in the past

... are you currently trying

… are you interested in trying next

Methods for parents:

Watch an episode of “Supernanny” that deals with children who have ADHD.

Read a book about managing behaviors for ADHD children.

Visit a website about ADHD.

Call a psychologist recommended by your doctor to ask about services offered for ADHD.

Call Cincinnati Children’s to ask about “Understanding & Managing ADHD” groups.

Attend a support group for parents to learn about managing ADHD.

Other: _________________________________

BEHAVIORAL TREATMENT

Updated: 04/19/2011

stuckere

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Copyright © 2012 Cincinnati Children's Hospital Medical Center; all rights reserved. Evidence-Based Decision Making (EBDM) – http://www.cincinnatichildrens.org/evidence James M. Anderson Center for Health Systems Excellence

Shared Decision Making Decision Aid

Bone Infection

1. What are the options for treating children with a bone infection? (also called osteomyelitis) After getting medicine through an intravenous line (IV) while in the hospital (i.e. <7 days), your child could…..

A. Go home and take medicine by mouth for a

total of 4–6 weeks

OR

B. Get a peripherally inserted central catheter (PICC), you would learn how to use and care for it, then go home and give IV medicine by PICC line for a total of 4–6 weeks

2. Issues you and your doctor may discuss:

• How your child is responding to medicine (e.g. fever, symptoms)

• The bacteria causing the infection, if known • What is involved in giving your child medicine

by mouth at home? (e.g. liquid vs. pill, how often)

• What is involved in getting a PICC line? • What is involved in caring for a PICC line at

home? • What is involved in giving medicine through a

PICC line at home? • Your preferences for treatment

3. What is known about the risk of a bone infection that fails to get better after 4–6 weeks? (also called chronic osteomyelitis)

Medicine by mouth • Less than 5% risk*

Medicine by PICC line • Less than 5% risk*

*No significant risk difference between these treatment options 4. What are the potential risks and complications?

Medicine by mouth • Allergic reaction • Child spits it up

Medicine by PICC line • Allergic reaction • Line stops working (e.g. it comes out or clogs) • Bacteria gets into blood through the line and

causes another infection • Skin gets infected where the line enters skin • At CCHMC, 15-20% of PICC lines for bone

infections had one of these problems last year

5. Assessment A. Do you know enough about the benefits and

side effects of each option? Y / N B. Do you have enough support and advice from

others to make a choice? Y / N C. Do you feel relatively sure about the best

choice for your son/daughter? Y / N 6. What do you want to do now?

Go home and take medicine by mouth for a total of 4-6 weeks

Get a peripherally inserted central catheter (PICC), learn how to use and care for it, then go home and give medicine for a total of 4-6 weeks

Not sure, prefer to decide later or need more help choosing

7. How could we have engaged you and your family in the decision more successfully?

http://www.cincinnatichildrens.org/evidence

Sustainability Planner INSTRUCTION SHEET & TOOL

Why use a Sustainability Planner? An important part of the improvement journey is planning how you are going to sustain your improvement efforts. The beneficial results of an improvement project have been sustained when the new ways of working have become the norm, or when things have not returned to the old way of doing things after a year. In order to ensure that an improvement is sustained, the changes made need continuously improve, evolve and adapt to both internal and external pressures. The Sustainability Planner encourages quality improvement teams to think about the seven key factors that will help practices sustain the improvements that they have made. These seven factors are:

1. Clarify what you are sustaining 2. Engage leaders 3. Involve and support front-line staff 4. Communicate the benefits of the improved process 5. Ensure the change is ready to be implemented and sustained 6. Embed the improved process 7. Build in ongoing measurement

The seven key factors for success are discussed below. For each factor, a set of ideas to consider has been provided, as has a small area for your team to plan your next steps. Although not all of the ideas provided will be applicable to your practice, the more ideas that are considered, the higher the chances of successful sustainability. How do I consider the key factors for success? 1. Clarifying what you are sustaining It is necessary that the entire team agrees upon what is being sustained. Is your team planning on sustaining a specific change idea, such as max packing patient visits to do as much as possible with the patient at each visit? Or is the team trying to sustain a change concept, such as reducing demand for visits through a number of different change ideas.

We are planning to sustain:

2. Engage leaders Research and experience demonstrate that the support of organizational leadership is essential to successful quality improvement work. Clinical and administrative leaders who work directly on, or indirectly support, the improvement project must ensure that all barriers to success are removed and project priorities are clearly identified and communicated.

Think about who needs to be on-side for changes to happen. Think about who ultimately influences whether or not something happens - these are the leaders within your practice/clinic. For small offices, the leaders may be everyone who works in the office (e.g., physicians/NPs, RN and receptionist).

Ideas to Consider Next Steps ☐ A provider champion (physician and/or NP), has been identified and has

agreed to participate in the improvement efforts.

☐ The provider champion has devoted time to dialogue with and participate as a member of the improvement team.

☐ If applicable, your business manager or executive director has agreed to support the improvement efforts.

☐ Leaders have the skills/knowledge required to support successful implementation.

☐ Leaders have removed barriers or threats to facilitate process improvement.

☐ Leaders are able to clearly articulate the benefits of the improvement project such as: improved access to care, patient safety, improved patient experience and/or increased staff skills.

☐ Leaders have provided the required resources to ensure the changes are sustained (e.g., time for staff to incorporate the changes into day to day operations).

To strengthen leadership engagement, we will:

3. Involve and support front-line staff Front-line staff members play an important role throughout every quality improvement initiative. In the early phases of a project, they may be involved in identifying problem areas and solutions to test. Later, they may be involved in identifying training needs and delivering / receiving training themselves. Continual support and evaluation of the needs of those working within changed processes is necessary to ensure that changes are sustained.

Ideas to Consider Next Steps ☐ Staff members were provided with information about the purpose and

significance of the improvement initiative.

☐ Front-line staff helped to identify issues from their perspective.

☐ Front-line staff members have been involved in developing solutions.

☐ The ‘right’ (most appropriate or qualified) staff are involved in the improvement project.

☐ Methods to regularly communicate with staff other than those directly working on the improvement team have been identified and used.

☐ A plan to address future skills and training needs has been created.

To strengthen the involvement of front-line staff, we will:

4. Communicate the benefits of the improved process Changes should address the root causes of problems and produce measurable benefits that meet the needs of all stakeholders (i.e., patients, front-line staff, providers, and leaders). Each stakeholder should be able to determine what benefits the changes bring to him or her.

Ideas to Consider Next Steps ☐ Unique and targeted ‘what’s in it for me’ characteristics have been

communicated to different stakeholders.

☐ Baseline data and ongoing real-time data for the measures is being collected regularly, tracked on a run chart and shared.

☐ Stories, updates at staff meetings and a visual display of data have been shared.

☐ Information about the improvement (i.e., patient outcomes, improved efficiencies, how the improvement efforts have been able to reduce or eliminate duplication of effort, unnecessary or repetitive work, unreliable processes, or excessive waits or delays) have been shared with stakeholders as the new way of work.

To communicate the benefits of change, we will:

5. Ensure the change is ready to be implemented and sustained If your improvement team has not finished testing their change ideas through PDSA cycles, then it is too early to consider full implementation and sustainability. Similarly, if the change is perceived as an additional duty or task, then the improvement is unlikely to be integrated into the clinic’s culture or become ‘the way things are done’. It is important to ensure that the change idea is effective and beneficial before moving to the implementation/sustainability phase. Many practices have expended a great deal of energy and time on the implementation of change ideas that did not improve quality or streamline processes.

Ideas to Consider Next steps ☐ There is clear evidence that solutions address the root causes of real

issues.

☐ The change has been successfully tested in a variety of conditions.

☐ The change will not benefit from any further testing or modification.

☐ The project measures are demonstrating real improvement.

☐ Improvement targets or goals have been achieved or are close to being achieved.

☐ The changes have improved efficiency or made jobs easier (reduced waste, avoided duplication, made things run smoother).

To ensure the change is ready to be implemented and sustained, we will:

6. Embed the improved process A common barrier to sustainability is not linking the goal of the improvement project to the strategy or vision of the organization. Without this link, it is often difficult for people to determine why valuable resources are being allocated to the improvement project. An improvement is much more likely to be sustained if it is well integrated into the culture and core processes of a practice/clinic and if it is flexible and able to respond to changes in the environment. In order to do so, the systems supporting the improvement need to be adapted so that they are compatible with the change.

Ideas to Consider Next Steps ☐ The improvement project is important to the continued success of the

practice/clinic.

☐ The necessary facilities, supplies, and equipment are in place to support the new process.

☐ Training has been provided to staff and providers about the improved processes and changes so they know what is expected of them.

☐ Job descriptions have been updated to reflect the altered roles.

☐ Policies and procedures have been updated or created to reflect the new processes.

☐ The new processes are now “standard work” and supported with medical directives, forms, checklists, reminders (visual cues), and technology.

☐ The team has a mechanism for discussing, examining and adapting the improved processes in response to internal and external changes.

To embed the improved process and make it the new standard, we will:

7. Build in ongoing measurement Establishing an ongoing measurement system and a standardized way of communicating results reinforces that the change is important to the practice. A mechanism for looking at a few key and relatively easy to extract measures allows teams to see if there is slippage and to take action to resolve any issues. It also allows teams to celebrate when an indicator has stayed at an improved level over time.

Ideas to Consider Next Steps ☐ There are internal skills and a culture for continuous improvement.

☐ A refined set of measures to track on an ongoing basis is identified. (If the team is sustaining improvements in access, track future open capacity and third next available appointment.)

☐ A group or person has been assigned responsibility to extract the data for this refined set of measures.

☐ There is a structure or mechanism in place for reviewing the measures on a regular basis.

☐ There is a plan for communicating performance to front-line staff, providers, and leaders within the practice.

☐ There is a plan to outline what we will do to reflect on our progress – to celebrate continued success and to respond if our measures start to slip.

☐ Celebrate accomplishments and aspire to take performance to a new level.

To strengthen our capacity for ongoing measurement, we will:

Helpful Sources

x Centre for Healthcare Quality Improvement (2010). Sustainability Planning: A Guide for ED-PIP Coaches &Team Leads. CHQI: Toronto, Ontario.

x NHS Modernization Agency (2002). Improvement leader’s guide to sustainability and spread. Ancient House Printing Group: Ipswich, England.

x Maher, Lynn, Gustafson, D. and Evans, A. (2007). NHS Sustainability: Model and Guide. NHS Institute for Innovation and Improvement: England.

ISBN 978-1-4606-3780-7 (PDF)

Key factors What is important? Key to success Questions for you

INNOVATION We need to continue improving quality of care for patients in safe, effective and person-centred ways

There is clear benefit and innovation in the improvement

What are the benefits of the change?What is the plan to articulate the benefits? Who are your early adopters to support you in making the change?

MEASUREMENT We need to measure changes to determine which demonstrate improvement and by how much

Staff are able to use real time data to drive improvement

Do you have existing data you can use?How will you collect your data?How are you going to analyse and communicate the results?

HUMAN FACTORS

We need to design systems and processes that take into account what we know about human behaviour

Understanding why common errors are happening and then redesigning the process to prevent the errors

Are there changes you can make to the design of the process that will reduce the likelihood of errors? How can you design the process so that it encourages people to sustain the new way of doing things?

CULTURE We must be aware of fundamental beliefs in our culture and work to change those which block QI work

Seek to understand the role of culture on our behaviours and ability to deliver improvements

What words describe the current culture you want? What needs to be done to move to the new culture? What different cultures exist in your setting and how will you package change to appeal to each of their values?

CHANGE MANAGEMENT

We must acknowledge both the technical and social aspects of change and improvement efforts

People are supported to understand the problem a change is attempting to fix and involved in designing and testing the solutions

What technical and social elements need to be considered in terms of the proposed change. If someone is resisting change, have you taken the time to understand why? Is there anything you need to do differently to address the concerns of those resisting the change?

LEADERSHIP We need to embrace leadership that sacrifices self-interest and puts quality and safety at the centre of all we do

Leaders who can combine technical QI skills with effective interpersonal and relational skills

How have you connected with stakeholders to enable them all to contribute views, expertise and ideas?How are you planning to communicate to stakeholders any improvements you make?

KNOWLEDGE INTO ACTION

We need to understand how to translate and embed our best ideas and evidence

Knowledge and resources of all kinds are accessible, used and shared

What knowledge supported your innovation and where did it come from?What methods could you use to share knowledge to support other QI teams to spread the improvement?

ENGAGEMENT We need to support mobilisation for improvement across a diverse set of health and social care stakeholders

Everyone with a vested interest, across all levels and roles, has a voice in the improvement team

How are you connecting with people to remind them why the work is needed?How will you help them feel part of the change and have an important role to play?

EVALUATION We need evidence as to what changes have been made, and when and how they made an impact

Develop plans from the outset to understand how activities, outputs outcomes link and ensuring learning and feedback loops are in place

How do you currently evaluate your QI work? How do you capture feedback from staff, patient, carers and act on your learning?

EMPOWERMENT We must listen to the experiences and views of people who provide services and people who use services to drive improvement

Hear, listen and respond to the voices of staff, patients and carers when attempting to improve services

How do you engage with staff, patients and carers to hear about their experiences and ideas for improvement?How much are people able to influence the process of improvement work?

Figure 2: The 10 factors explained! What to start thinking about and asking about in terms of QI spread and sustainability

16

Thank you for your participation and feedback! Please return completed evaluation to AAP staff at the end of the Learning Session.

Family Engagement Quality Improvement Project Learning Session Evaluation

June 3 – 4, 2016

1. Overall, to what extent did the Learning Session meet your expectations with regard to the following?

Exceeded (5)

(4)

Met (3)

(2)

Failed (1)

a) Content of the presentations

b) Organization of the presentations

c) Effectiveness of the teaching and instructional methods

d) Logistics (location, hotel, meeting room)

Comments___________________________________________________________________________________________

2. Indicate your agreement with each of the following statements about the Learning Session.

Strongly Agree

(5)

(4)

Neutral

(3)

(2)

Strongly Disagree

(1)

a) There was enough time to meet as a team

b) There was enough time dedicated to educational presentations/lectures

Comments ___________________________________________________________________________________________

3. How would you rate each of the following sessions in terms of usefulness in your practice?

Very Useful

(5)

(4)

Somewhat Useful

(3)

(2)

Not Useful

(1)

N/A

Family Story and Introduction to Family Engagement (Hunting)

Quality Improvement in the Real World (Gubernick)

Parent/Caregivers only: Introduction to Quality Improvement (Hunting)

Storyboard Presentations (Teams)

Sustainability (Weller)

Shared Decision Making (Thompson & Graham)

Report on Baseline Data and Pre-Implementation Survey (Gubernick)

Parent/Caregivers only: Helpful Tools for Your Role as a Parent Partner (Hunting)

4. What part(s) of the Learning Session did you find most valuable?

5. Please suggest any topics you think we should cover during the QI project via email and/or during monthly calls.

6. Share any additional comments or feedback on the Learning Session.


Plan a Test of Change Cycle #:_1_Start Date: 7/12/16 End Date: 7//13


PLAN: QUESTIONS Can our care coordinator send out this decision aid, as well as the Pre-encounter/visit cards and booklet on ADHD treatment modalities to the appropriate parents/caregivers via the patient portal at least 1 week prior to the scheduled visit? Will parents/caregivers read and complete the personal information and cost estimates prior to being seen by the physician? Will Dr. Gordon have time to review and discuss it with the family? Will this aid be helpful to parents/caregivers?

PREDICTIONS We predict that our care coordinator, Linda, will successfully send these resources/tools at least 1 week prior to the visit at least 95% of the time. We predict at least 90% of the parents/caregivers will complete the treatment goals and preferences card; 70% will add behavior treatments tried, currently trying or interested in trying; 75% will add personal information to the Medication Choice card; only 50% will complete the out-of-pocket cost estimates. Dr. Gordon predicts this will increase the visit time but will help the parent/caregiver be more knowledgeable and involved with the treatment plan.

PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Tasks: Linda will confirm that there is 1 or more patient(s), <11 yrs. old and newly diagnosed with ADHD scheduled for appointments on July 12th and/or 13th. She will also print out the Medication Choice cards, as instructed on the Cincinnati Children’s website (http://www.cincinnatichildrens.org/service/j/anderson-center/evidence-based-care/decision-aids/ ). Dr. Gordon will study the “Card Guide”( http://www.cincinnatichildrens.org/WorkArea/linkit.aspx?LinkIdentifier=id&ItemID=100745&libID=100440 ) for discussing medication treatment options with the parent/caregiver. On July 5th, Linda will send a message and the ADHD Pre-visit cards and Medication Choice cards via the patient portal to the parents/caregivers whose children meet the criteria, with instructions to complete the goals/preferences, behavior treatment(s) and personal information sections and out-of-pocket medication cost estimates, if appropriate. Parents will be asked to bring the completed information to their visit. Prior to entering the exam room, Dr. Gordon will be handed the parent-completed goal/preference card, behavioral treatment card and ADHD medication choice cards by the Joyce (MA).







Act Plan

Study Do






PLAN: QUESTIONS Can our care coordinator send out this decision aid, as well as the Pre-encounter cards and booklet on ADHD treatment modalities to the appropriate parents/caregivers via the patient portal at least 1 week prior to the scheduled visit? Will parents/caregivers read and complete the personal information and cost estimates prior to being seen by the physician? Will Dr. Gordon have time to review and discuss it with the family? Will this aid be helpful to parents/caregivers?

PREDICTIONS We predict that our care coordinator, Linda, will successfully send these resources/tools at least 1 week prior to the

visit at least 95% of the time. We predict at least 90% of the parents/caregivers will complete the treatment goals and preferences card; 70% will add behavior treatments tried, currently trying or interested in trying; 75% will add personal information to the Medication Choice card; only 50% will complete the out-of-pocket cost estimates. Dr. Gordon predicts this will increase the visit time but will help the parent/caregiver be more knowledgeable and involved with the treatment planning.

PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Tasks: Linda will confirm that there is 1 or more patient(s), <11 yrs. old and newly diagnosed with ADHD scheduled for appointments on July 12th and/or 13th. She will also print out the Medication cards, as instructed on the Cincinnati Children’s website (http://www.cincinnatichildrens.org/service/j/anderson-center/evidence-based-care/decision-aids/ ). Dr. Gordon will study the “Card Guide” (http://www.cincinnatichildrens.org/WorkArea/linkit.aspx?LinkIdentifier=id&ItemID=100745&libID=100440) for discussing medication treatment options with the parent/caregiver. On July 5th, Linda will send a message and the ADHD Pre-visit cards and Medication cards via the patient portal to the parents/caregivers whose children meet the criteria, with instructions to complete the goals/preferences, behavior treatment(s) and personal information sections and out-of-pocket medication cost estimates, if appropriate. Parents will be asked to bring the completed information to their visit. Prior to entering the exam room, Dr. Gordon will be handed the parent-completed goal/preference card, behavioral treatment card and ADHD medication choice cards by the Joyce (MA).



REPORT THE RESULTS OF YOUR TEST HERE. Describe observations, problems encountered, and special circumstances. Linda sent messages and resources on July 5th to 3

parents/caregivers who children met the criteria and had appointments on July 13th. All 3 parents brought the cards with them but only one had completed all the requested information. All 3 parents wanted to discuss medication options. Dr. Gordon said the first discussion took a long time because he presented all of the medication choice issue cards but forgot to ask the parent which one she wanted to discuss first. Found he didn’t need to discuss all 5 cards when he remembered to do that (ask first) with the other 2 parents!

STUDY: COMPLETE ANALYSIS OF DATA; SUMMARIZE WHAT WAS LEARNED Only one parent completed the medication cost estimate. One parent was unable to get the info from her health plan and one forgot. Dr. Gordon reported that following the “card guide” was helpful for him but he feels he needs more practice! Parents reported that the aids increased their knowledge of ADHD treatment options, were easy to understand and helped them be involved in making the decision about their child’s treatment plan. Dr. Gordon reported parents more involved. They all liked the medication issue cards. One parent was surprised when Dr. Gordon asked her which medication issue she wanted to discuss first. One parent expressed appreciation for the booklet and for being referred to a parent support group.

ACT: ARE WE READY TO MAKE A CHANGE? Modifications or refinements to the test? Plan for

next cycle: What happens when parent/caregiver has not completed or brought the cards with them? Can they be given

to the parent/caregiver to complete in the exam room or completed by Dr. Gordon, in discussion with the family? Note: We also need to learn what summer behavioral treatment programs are available in our community/county!

Act Plan

Study Do







Can this strategy be incorporated into the visit? Can it be documented in the EHR? PREDICTIONS It will take some practice for Dr. Green to feel comfortable asking for patient/parent

to share in own words what she explained regarding when to use which asthma medications.

PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Task: Prior to 7/1, Dr. Green and clinical staff will review the Teach Back toolkit (http://www.nchealthliteracy.org/toolkit/tool5.pdf ) and the “Always Use Teach Back” resources (http://www.ihi.org/resources/Pages/Tools/AlwaysUseTeachBack!.aspx) Dr. Green will conduct teach-back with the last patient scheduled tomorrow who has a diagnosis of asthma and a newly created or updated asthma action plan. Dr. Green will review the plan with the patient and/or parent/caregiver and then will ask “I want to be sure that I explained the medications correctly. Can you tell me how and when you are going to take/give these medicines?” This process will be repeated until the patient/parent or caregiver can explain it properly in own words. At end of visit, Dr. Green will ask patient and/or parent/caregiver for their feedback about the usefulness of the technique.

PLAN FOR COLLECTION OF DATA: WHO, WHAT, WHEN, WHERE Documentation of feedback from patient and/or parent/caregiver about the usefulness of the method. Dr. Green will also give feedback and her reflections about using the teach-back method.






Act Plan

Study Do







Can this strategy be incorporated into the visit? Can it be documented in the EHR? PREDICTIONS It will take some practice for Dr. Green to feel comfortable asking for patient/parent to share in own words what she explained regarding when to use which asthma medications.

PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Task: Prior to 7/1, Dr. Green and clinical staff will review the Teach Back toolkit (http://www.nchealthliteracy.org/toolkit/tool5.pdf ) and the “Always Use Teach Back” resources (http://www.ihi.org/resources/Pages/Tools/AlwaysUseTeachBack!.aspx) Dr. Green will conduct teach-back with the last patient scheduled tomorrow who has a diagnosis of asthma and a newly created or updated asthma action plan. Dr. Green will review the plan with the patient and/or parent/caregiver and then will ask “I want to be sure that I explained the medications correctly. Can you tell me how and when you are going to take/give these medicines?” This process will be repeated until the patient/parent or caregiver can explain it properly in own words. At end of visit, Dr. Green will ask patient and/or parent/caregiver for their feedback about the usefulness of the technique. PLAN FOR COLLECTION OF DATA: WHO, WHAT, WHEN, WHERE Documentation of feedback from patient and/or parent/caregiver about the usefulness of the method. Dr. Green will also give feedback and her reflections about using the teach-back method.



Dr. Gordon conducted the teach-back method, as planned. She found she talked too fast and needed to slow down so she could explain the plan clearly to the patient’s mother.

STUDY: COMPLETE ANALYSIS OF DATA; SUMMARIZE WHAT WAS LEARNED The parent reported she felt intimidated at first that she was going to have to explain what she heard but said the way Dr. Gordon explained that she wanted to make sure she had explained it well made her feel better. Dr. Gordon said she learned to keep the instructions simple and not rush through them. She felt it will take some practice to get better at doing it, as well as to remember to do it routinely.


Plan for next cycle: Dr. Gordon will use the teach-back method for the first 2 patients scheduled tomorrow with a

diagnosis of asthma and will ask patients/families for feedback again. She will share what she’s learned with her colleagues at the staff meeting later in the week.

Act Plan

Study Do






PLAN: QUESTIONS Will the parents/caregivers respond to our request via the Patient Portal?

How far in advance of the appointment should staff send the request for the completion of the form?





PLAN FOR COLLECTION OF DATA: WHO, WHAT, WHEN, WHERE At the end of 8/1, count # of 11 yrs. old patients seen that day for well visit and how many had documentation in the record of a completed pre-visit form (# completed prior to visit and # completed that day). At end of visit, parent/caregiver will be asked for feedback about the form…was it useful? What did they like about it? What changes should be made?






Act Plan

Study Do




PLAN: QUESTIONS Will the parents/caregivers respond to our request via the Patient

Portal? How far in advance of the appointment should staff send the request for the completion of the form?





PLAN FOR COLLECTION OF DATA: WHO, WHAT, WHEN, WHERE At the end of each day during week of 8/1, count # of 11 yrs. old patients seen that day for well visit and how many had documentation in the record of a completed pre-visit form (# completed prior to visit). At end of visit, parent/caregiver will be asked for feedback about the form…was it useful? What did they like about it? What changes should be made?



On July 18th, Mary sent the secure emails to the primary caregiver of each 11 yrs. old patient with an appointment scheduled during the week of Aug.1st. Of the 10 families she emailed, all had portal accounts (thanks to our recent enrollment campaign!); 1 did not have a valid email address so she followed up with that mom by phone. Two completed forms were returned by the end of the day!

STUDY: COMPLETE ANALYSIS OF DATA; SUMMARIZE WHAT WAS LEARNED Of the 10 parents/caregivers contacted for that week’s appointments, only 6 (60%) completed and returned the form at least 24 hrs. prior to the visit. Joyce report that 2 completed/submitted forms were not found in the patient’s record to review and the questions had to be asked again which did not make the parent/caregiver happy. All 6 parents/caregivers offered feedback: Q2 had a duplicate question; for Q4, being asked “who” was confusing; for Q5, how do they know if the patient will need bloodwork? They all liked Q7 (top 3 concerns/topics to discuss at the visit). Four reported getting the email 2 weeks before the visit gave them time to put it aside. A reminder would be helpful. Dr. Gordon reported she forgot to review the form for the first two 11 yrs. old patients she saw (she’d missed Huddle that morning!). An additional 4 parents/caregivers who scheduled the patient’s adol. well-visit less than 2 week before the appointment date did not receive a form via the portal prior to the appointment so all had to complete the form at the appointment!


PLAN FOR THE NEXT CYCLE: Mary will generate emails, with form, 1 week before appointment data and will edit message of auto-reminder sent 48 hrs. before appointment date. Joyce will download submitted forms each day and scan them into the patient’s record prior to the visit. Huddle will include # of 11 yrs. old being seen for well-visits that day (as reminder to review/discuss pre-visit form and HPV decision aid which are both currently being tested).

Act Plan

Study Do







PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Task: Harriet (Care Coordinator) will assess portal account status of families with CSHCNs who are scheduled to be seen in August in our office. Those families without an activated account will be referred to our tech support staff member (Ernest) to do follow up and help them sign up for the portal and gain access. On July 15h, Harriet will send a secure email via the patient portal with the 1-page FCC Coordination Questionnaire (https://medicalhomes.aap.org/Documents/FamilyCenteredCareCoordination.pdf ) attached. Instructions to email the completed form back to her prior to the scheduled visit, using the portal’s secure email system or to fax it back to her attention or bring the completed form to the visit.







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PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Task: Harriet (Care Coordinator) will assess portal account status of families with CSHCNs who are scheduled to be seen in August in our office. Those families without an activated account will be referred to our tech support staff member (Ernest) to do follow up and help them sign up for the portal and gain access. On July 15h, Harriet will send a secure email via the patient portal with the FCC Coordination Questionnaire (https://medicalhomes.aap.org/Documents/FamilyCenteredCareCoordination.pdf ) attached. Instructions to email the completed form back to her prior to the scheduled visit, using the portal’s secure email system or to fax it back to her attention or bring the completed form to the visit.




Harriet found that only about 50% of those families with CSHCNs have an activated patient portal account. Those without an active portal account were referred to Ernest for follow up. Emails were sent on July 15th by Harriet via the portal to all parents/caregivers with an activated account.

STUDY: COMPLETE ANALYSIS OF DATA; SUMMARIZE WHAT WAS LEARNED Of those families referred for follow up by Ernest, he reported that only 15% of those he contacted signed up and activated their portal account. Harriet will plan to meet with the QI team to discuss how to improve patient portal enrollment and to plan one or more tests of change with an aim to increase portal participation. Of those who received the email with the FCC questionnaire, 60% completed and returned the questionnaire via the secure email system, 10% faxed the form back prior to the appointment date and 10% brought the completed form to the visit.


Plan for next cycle: Need to increase patient portal enrollment and activation before conducting the next cycle.

For next cycle, Harriet will also ask parents/caregivers for feedback about the communication process and about the questionnaire.

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PREDICTIONS Questions will be verbally asked by Dr. Richards to at least 75% of the primary caregivers seen for a WCC visit tomorrow afternoon and documented in the patient records.








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PREDICTIONS Questions will be verbally asked by Dr. Richards to at least 75% of the primary caregivers seen for a WCC visit tomorrow afternoon and documented in the patient records .





Dr. Richards used the smart set questions as part of the appropriate WCC visits. He also took time to document the responses in the Notes section of the visit record. He felt it would be helpful information for future interactions with the family. He reported that the reaction from the parent of a 2-yrs. old was “why are you asking me these questions?” so he started prefacing his questions by saying that he is asking them to all parents/caregivers with a child 0-3 yrs. old.

STUDY: COMPLETE ANALYSIS OF DATA; SUMMARIZE WHAT WAS LEARNED All 5 of the primary caregivers seen by Dr. Richards this afternoon were asked the resilience questions during the visit (except 1 grandmother who was not the primary caregiver) = 100%. Dr. Richards shared that the patients/families he saw this afternoon did not have any special needs so asking the questions did not blow his schedule out of the water but he expressed concern about taking the time when that is not the case. Can someone else ask those questions or should we consider sharing these questions with the family prior to the scheduled appointment and asking them to write down their answers?


Plan for next cycle: PFAG members would like to get informal feedback from the primary caregivers at the end of the

visit. For Cycle 2, Alice (N Manager) will ask those parents/caregivers (before check-out) for feedback about those

questions they were asked and what else they may want/need (e.g., would they like information or help developing a plan in advance for how they will keep themselves calm and centered in these stressful circumstances).

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Act Plan

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Two representatives from the EI program our staff meeting on July 25th. Good questions were asked. There was some confusion among the physicians about the referral process. A lengthy discussion followed about how communication and information sharing by EI with our practice needs to be improved. The program manager left her card and encouraged the physicians and staff to call her in the future with any questions or concerns related to these issues.

STUDY: COMPLETE ANALYSIS OF DATA; SUMMARIZE WHAT WAS LEARNED All participants completed the evaluation form but it up took too much time. Overall, everyone thought the presentation and information shared was useful. The physicians especially liked the face-to-face interaction. Feedback included that next time 1 or more parents/caregivers who use or have used the services of the invited org/agency should be invited to attend that part of our meeting. Three physicians would like to learn more about the Family-to-Family Health Information Centers.


Plan for next cycle: There is no August meeting. Mary Jo will contact our state’s Family-to-Family Health Information

Center and invite them to attend our Sept. meeting. We will also identify 1 or more family(ies) who use the support and/or services that they offer and invite them to attend that portion of our meeting. Rather than collecting the evaluation/feedback on paper, we will test using Survey Monkey and send the URL via email to each meeting attendee after our next meeting.

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PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Tasks: By June 10th, Alice (N Manager) will export to Excel a list of all of the care plan elements included as possible choices in the NICHQ Care Plan Template which she downloaded from https://www.nichq.org/resource/nichqs-care-plan-template. She will cross-walk it with data fields currently in our EHR. She will also share the file via email with all of the physicians and clinicians, as well as the 15 members of our Parent/Family Advisory Group, asking them by June 17th to place an “X” in the appropriate column for each element which is a “must include” and for each element viewed as a “could include.” Alice will tally the results to share with our core QI team, including our parent partner, when they meet on June 24thto identify the initial care plan elements to be included and tested by Dr. Green. On July 1, this initial care plan template will be tested by Dr. Green with the last patient with special healthcare needs he is scheduled to see that day.







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https://www.nichq.org/resource/nichqs-care-plan-template








PLAN FOR CHANGE OR TEST: WHO, WHAT, WHEN, WHERE Tasks: By June 10th, Alice (N Manager) will export to Excel a list of all of the care plan elements included as possible choices in the NICHQ Care Plan Template which she downloaded from https://www.nichq.org/resource/nichqs-care-plan-template. She will cross-walk it with data fields currently in our EHR. She will also share the file via email with all of the physicians and clinicians, as well as the 15 members of our Parent/Family Advisory Group, asking them by June 17th to place an “X” in the appropriate column for each element which is a “must include” and for each element viewed as a “could include.” Alice will tally the results to share with our core QI team, including our parent partner, when they meet on June 24thto identify the initial care plan elements to be included and tested by Dr. Green. On July 1, this initial care plan template will be tested by Dr. Green with the last patient with special healthcare needs he is scheduled to see that day.




Tasks were completed as described in Plan. Dr. Green was able to create, print out, share and review the care plan with the last patient with special healthcare needs that he saw today. Many fields were populated with data from our EHR which was helpful but that did not include information recorded as a “Note.” It was “tested” with a 5 yrs. old child whose mom has been good advocate for her at her school. She reported that she likes the information about her child’s strengths and favorite activities but doesn’t like that it includes the fact that she has trouble paying for her daughter’s medications, since she shares this plan with the school nurse.

STUDY: COMPLETE ANALYSIS OF DATA; SUMMARIZE WHAT WAS LEARNED The feedback was shared with the QI team. Since the printed care plan was only 3 pages long, there is an opportunity to add some additional elements, preferably one or two “could include” that are already being collected in the EHR. The QI team is reconsidering including social risks which the physicians/clinicians wanted but not the parents/caregivers. Need to prioritize “must have” elements that currently require typing the information into the template, to see which could be created as data fields in the EHR that could then populate the care plan electronically.


PLAN FOR THE NEXT CYCLE: Care plan template was tweaked, to remove social risks and add list of “primary”

school team members and community-based providers engaged with the child/youth (daycare, Early Intervention, Head Start, transportation providers, etc.), and contact information. Dr. Green will test the use, sharing and review of care plan with patients/families with CSHCNs seen tomorrow and will gather and give feedback to the QI team. Findings of these cycles will also be shared and discussed at the full staff meeting next week.

Act Plan

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Family Engagement Quality Improvement Project December Monthly Progress Report

DATE DUE: December 30, 2016

The Monthly Progress Report (MPR) details the tests of change related to family engagement practice teams undertook during theaction period and any success stories or challenges they encountered.

1. Practice Name:*

Project Aim Statement: By January 2017, 10 pediatric primary care practices will work individually and collaboratively to test,implement, disseminate, and plan to sustain strategies that lead to improved family engagement in clinical practice through enhancedshared decision-making and connection of families to appropriate supports and services.

Instructions:





4. Rate the impact of the project on patient/family communication and health care team experience in caring for patients andfamilies.

Click "Next" to begin:


2.

Did you meet as a team throughout the month of December to plan tests of change and discusschallenges/successes?

*

Yes

No


3. How many times did you meet as a team?

4. Who attended the team meetings (for example, core improvement team members, additional practicestaff, parent/caregiver partners, other family members, Information Technology staff, etc)?

5. What did your team discuss during team meetings?


Family Engagement Tests of Change and Tools:

Please identify the changes you have tested within the past month. For each, describe changes, the impact/learning from this changeyou have made, and/or the tools you have tested.

6. Has your practice developed and/or modified one or more decision aid(s) in practice (modification couldinclude adding a practice name or logo to a decision aid)?

*

Yes

No


7. If yes, please specify what decision aid was developed and/or modified in practice.*

Cincinnati Children's Hospital Decision Aids

Ottowa Family Decision Guide

Dartmouth-Hitchcock Decision Support Tools


8. Please describe how you developed/modified the decision aid in practice.*


9. Has your practice implemented one or more decision aid(s) in practice?*

Yes

No


10. If yes, please specify what decision aid your practice implemented.*

11. Please describe how you implemented the decision aid(s) in your practice.*


12. Does your practices have a system in place for tracking and following up on referrals to appropriatesupports and services for patients/families/caregivers?

*

Yes

No



*





Patient registry


14. Please describe how you implemented the system for tracking and following up on referrals toappropriate supports and services for patients/families/caregivers.

*


15. Does your practice have an engaged parent/caregiver partner that is a core member of theimprovement team?

*

Yes

No


16. If yes, please provide one or more example(s) of how the parent/caregiver partner was engaged inimprovement team activities throughout this Action Period.

*


17. Does your practice have a system in place for obtaining feedback from families on patient/familyexperience?

*

Yes

No


18. If yes (you have a system in place for obtaining feedback from families on patient/family experience),please select an example of what this system is:

*





Suggestion boxes


19. Please describe how you implemented the system(s) for obtaining feedback from families onpatient/family experiences.

*


20. Did your practice host a “lunch and learn” with a community-based organization that included practicestaff and/or family members?

*

Yes

No


21. If yes, please describe what you learned at the “lunch and learn” and any changes you plan toimplement based on what you learned.

*

22. Please select the focus of the community-based organization:*

Child-Care

Housing Assistance

WIC

Nutrition

Title V




23. Did your improvement team share project results and progress with the rest of the practice/clinic staff(this can also include parents/caregivers)?

*

Yes

No


24. If yes, please identify how project results/progress were shared with the rest of the practice/clinic staff.*







25. What other tests of change did your practice test/implement related to shared-decision making? Shareddecision making is a collaborative process that allows patients and their health care providers to makehealth care decisions together, taking into account the best scientific evidence available, as well as thepatient’s values and preferences.

A model for shared decision making includes: 1) Introducing choice; 2) describing options; 3) helpingpatients explore preferences and make decisions.

*

26. What other tests of change did your practice test/implement related to connecting families toappropriate supports and services?

*


27. Share something important, surprising, or successful your team learned/implemented this month.*

28. What was the biggest barrier/challenge your team encountered this month? Were you able toovercome it? If so, how?

*

Much less time (5) 4 No change (3) 2 Much more time (1)

29. Think about the changes your team has implemented as part of the “Family Engagement QualityImprovement Project.” Because of this project, the overall office visit time for patients and families has (Rate on a scale of 1-5, where 5=significantly decreased and 1=significantly increased)

*

Much more confident (5) 4 No change (3) 2 Much less confident (1)

30. Think about the changes your team has implemented as part of the “Family Engagement QualityImprovement Project.” Because of this project, the care team’s confidence about engaging families inshared decision-making has become: (Rate on a scale of 1-5, where 5=much more confident and 1=much less confident)

*

31. What issues or topics would you like to discuss on a monthly project team call or through the projectemail list?

*

Please click "Done" to submit your report.Thank you!


DATE DUE: December 30, 2016

The Monthly Progress Report (MPR) details the tests of change related to family engagement practice teams undertook during theaction period and any success stories or challenges they encountered.

1. Practice Name:*

Project Aim Statement: By January 2017, 10 pediatric primary care practices will work individually and collaboratively to test,implement, disseminate, and plan to sustain strategies that lead to improved family engagement in clinical practice through enhancedshared decision-making and connection of families to appropriate supports and services.

Instructions:





4. Rate the impact of the project on patient/family communication and health care team experience in caring for patients andfamilies.

Click "Next" to begin: