pcori ambassador annual meeting: connecting a pcor … · relationship toward patient-centered...

PCORI Ambassador Annual

Meeting: Connecting a PCOR Community

June 19, 2014

Minneapolis, MN

Ambassador Annual Meeting, June 19, 2014 1

Welcome and Logistics

Sue Sheridan, MIM, MBA

Director, Patient Engagement


Agenda for June 19th

3

9:00 – 9:15 a.m. Welcome and Logistics

9:15 – 9:45 a.m. Update: Ambassador Program

9:45 – 10:15 a.m.

Ambassadors in Action: “CaRe-Align Improving the Care of Persons with

Complex Health Needs: Realigning the Patient, Primary Care, and Specialty Care

Relationship toward Patient-Centered Care”

10:15 – 10:30 a.m. BREAK

10:30 – 11:00 a.m. Ambassadors and Social Media

11:00 – 11:30 a.m. Organizational Ambassador in Action: FasterCures

11:30 – 12:00 p.m. Patient and Family Engagement Rubric

12:00 – 12:30 p.m. Group Photo and Lunch

*Joint time with Regional Event Begins*

12:30 – 1:30 p.m.Patient-Centered Outcomes Research in the Field: What Does “Engagement in

Research” Look Like?

1:30 – 2:10 p.m. Discussion and Group Exercise: Building a Team

2:20 – 2:30 p.m. Examples of PCORI-Funded Research Teams

2:30 – 3:30 p.m. PCORI-Funded Research Team Exhibit and Table Fair

3:30 – 4:30 p.m. How to Apply for PCORI Funding

4:30 p.m. Closing

Ambassador Annual Meeting, June 19, 2014


Tweeting during the meeting?

Follow us at @PCORI or use #PCORI

Update: Ambassador Program

Aingyea Kellom, MPA

Program Associate, Patient Engagement


Objectives for Update

Discuss the progress of the program

Share programmatic accomplishments

Outline the next steps

Engage in a discussion around questions


What is the Ambassador Program?

A volunteer initiative to unite individual and

organizational Ambassadors around the promise of

patient-centered outcomes research (PCOR)

PCOR training

PCORI toolkit

Opportunities for engaging in research

Online community for networking


Program Recruitment

October 2013 Launched webpage and interest form

Sent invitations to PCORI advisory panelists, merit reviewers,

engagement meeting participants

February 2014 Sent invitation to PCORnet Partners and other engagement meeting

participants, such as the Nursing Roundtable attendees

Ongoing Receiving interest forms via the PCORI Ambassador webpage


Ambassadors by Stakeholder Group

To Date: 92 Ambassadors

75 individual and 17 organizational


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1715

2

5

25

19

31 1

0

5

10

15

20

25

30

Ambassadors by Ethnicity and Region

Children's Tumor Foundation - Friday, June 6, 2014 10

3%11%

11%

5%

67%

3%

Asian (NotHispanic orLatino)

Black or AfricanAmerican (NotHispanic orLatino)Hispanic or LatinoAmerican

Indian or AlaskaNative (NotHispanic orLatino)White (NotHispanic orLatino)

Other

15 29

2514

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17 Organizational Ambassadors by State

Children's Tumor Foundation - Friday, June 6, 2014 11

Organization State

Clinical Ambassador LLC NC

Mercy Health Chicago IL

Patient-Centered Primary Care Collaborative DC

National Association of Nurse Practitioners in Women's Health DC

Healthy Women NJ

Northern New Mexico Independent Physicians NM

The S.T.A. R. Initiative Il

National Patient Advocate Foundation(NPAF), and the American Heart

Association(AHA) CA

Dia de La Mujer Latina NY

University of NM- Dept. of Psychiatry NM

FasterCures DC

Epilepsy Foundation Central & South Texas TX

Association of periOperative Registered Nurses CO

International Cancer Advocacy Network (ICAN) AZ

American Occupational Therapy Association MD

Dia de la Mujer Latina NY

American College of Physicians PA

What’s been done?

53 Trained Ambassadors

Ambassador toolkit completed and updated

First quarterly newsletter distributed

Established Yammer Community

Connected 5 Ambassadors to a PCOR project

Various PCOR Ambassador presentations completed


Next Steps

Program Recruitment Continue to recruit from advisory panelists, merit reviewers,

and others who have participated in PCORI events

Ambassadors Posted to Webpage

Migration from Yammer to Chatter Activity Tracker

Faster intake of interest forms

Program Evaluation and Targeted Interviews-August 2014



Q & A

CaRe-Align InitiativeImproving the Care of Older Adults

with Multiple Conditions with Complex Health Needs:

Realigning Primary and Specialty Care to Focus on What Matters

Most to PatientsJune 19th, 2014

Collaborating Partners

• Patient Centered Outcomes Research Institute (PCORI) – Principal Investigator: Caroline Blaum, MD

New York University School of Medicine

• John A. Hartford Foundation – Principal Investigator: Mary Tinetti, MD

Yale University School of Medicine

The Problem

• Older adults with multiple conditions andcomplex health needs receive a lot of care,

• Care is fragmented across providers and settings,

• Each clinician focuses on subset of patient’s conditions,

• Care not always targeted at what matters to patients (i.e. their heath priorities/goals)

This fragmented care burdensome, costly and frustrating…

• For patients and caregivers

• For clinicians

• For health systems

• For payers

Eventual Goal Of CaRe-Align Collaboration

• CaRe-Align refers to a new approach to:

– Align the care received by older adults with multiple and chronic health needs with what matters most to them

– Realign current siloed, disease-centered, clinician driven care to primary-specialty integrated, patient-centered care

Phases of CaRe-Align Collaboration

• Planning phase

• Evaluation/comparative effectiveness

• Dissemination and Implementation

CaRe-Align: Project Partners

• Advisory groups working together:

– Patient/Caregiver Perspective

– Primary/Specialty Care Alignment

– Systems Redesign

• Stakeholders: Providing knowledge, experience, feedback, and input as planning evolves

Outcome /deliverable of CaRe-Align planning process

Integrated model of evidence-based core elements that together:

• integrate and align primary-specialty care

• focus care on what matters to patients (goals and priorities)

• are feasible and effect outcomes in 3-5yrs

• are adaptable to health system environments and resources

6 Elements of CaRe-Align*

Culture Shift and Changing Expectations (Cross-Cutting)

• Patient Goals Drive all Care• Goal Oriented Use of IT• Interdisciplinary Teams• Quality Metrics that Drive Primary/Specialty

Patient/Caregiver Alignment Toward Patient Goals • Business Case for CaRe-Align• Roles and Responsibilities of Primary/Specialty

Providers and Patients/Caregivers

* Elements are not listed in hierarchical order

ONE AMBASSADOR’S VIEW OF CARE-ALIGN AND BEYOND

MaryAnne Sterling

“The idea that mom’s primary care doc, cardiologist, and pharmacy are even close to working as a team and exchanging information to improve her healthcare is a work of fiction. Frankly, I would be happy if these three critical components of her healthcare ecosystem would simply exchange phone numbers!”

ONC HITPC & HITSC Health Information Exchange Public Hearing, January 2013

Finding My Advocate’s Voice

What I do and why…

What

• Speak

• Write

• Volunteer

• Participate

• “Lean in”

Why

• Personal family caregiving tsunami

• “People need to know”

• Change does not happen passively

• Tired of waiting for someone else to step up

• 93 million family caregivers need better support

The Walking Gallery

How CaRe-Align Hits Home

What Can You Do to Support CaRe-Align?

• Review these slides

• Be on the lookout for updates

• When the time comes…be CaRe-Align evangelists– Embrace social media as a tool

• Help the CaRe-Align team to overcome challenges:– Patient and caregiver engagement is hard to achieve

– Health IT does not currently support patient and caregiver directed care, provider and team communication, etc.

– Culture and expectations currently do not support primary and specialty care alignment around patient goals

Lean In!Challenges identified at the CaRe-Align Dallas meeting

ONE AMBASSADOR’S VIEW OF CARE-ALIGN AND BEYOND

Bruce Hanson

Pastor Bruce and Connie Hanson

Forty plus years of marriage to a Diabetic who had a Kidney Transplant followed by a massive Hemorrhagic Stroke and Breast Cancer.

Bruce and Connie HansonReverend Bruce Hanson

A Challenge: Multiple Facilities and Multiple

Providers

• No less than Three Different Clinics

• Four Different Hospitals (All hospitals have their own ER Attending Physician and their own Hospitalists)

• Fourteen Specialists

• One Primary (who when out is covered by four others in the Practice)

• Two Therapy Services

• Four Pharmacy's

• Three different Iowa State Offices as well as Federal Assistance

• Three Home Care Assistance programs

A Challenge: Care Verses Distance

without Communication

ALWAYS Prep Time One and a half to two hours

• Dubuque

– (Therapy) Two days a week • One and a half hours drive time each way

• LaCrosse Wis And/Or Rochester Minnesota

– (Regular appointments with Specialists) Five per month avg.

– (Oncology) Daily a month and a half– (Therapy) Two days a week

• Two and/or three hours drive time each way

• Prairie du Chien Wis

– (Two to three appointments per month) • Forty minutes drive time each way

• Manchester

– (Regular appointment with Counselor) • Hour and thirty five minutes each way

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Care is fragmented, not coordinated between primary and specialty care, and not responsive to the wishes and needs of

patients and caregivers

…care needs to change

Coordinating Care for ONE IS NOT

for the Faint of Heart.

For More Information

• To learn more about the CaRe-Align Collaboration, please contact Jessica Esterson:

[email protected]

BREAK

10:15 AM-10:30 AM


Social Media 101

Annie Hammel

Social Media Lead

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http://youtu.be/6US0LS4edUQ

http://youtu.be/6US0LS4edUQ

What is Social Media?

“Social media refers to forms of electronic communication

(as Web sites for social networking and microblogging)

through which users create online communities to share

information, ideas, personal messages, and other content

(as videos)”

- Merriam-Webster

Which Platforms Do You Use?

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Why Do You Use Facebook?

Connect with friends & family

Participate in professional groups

Convenient

Ease of use

“I'm not a big fan of FB for in-depth conversations, and

would prefer to do that through other sites and patient

forums.”

“Quick way to offer help/suggestions to others in need who

request it.”

“Good way to market / advertise ideas and collect feedback

and responses”

42

Why Do You Use Twitter?

Succinct

Timely

Able to get information in “real-time”

“Can get a broad range of information from across disciplines and

industries very quickly.”

“The ability to quickly share my message/blog/speech/presentation with

thousands of people – instantly!”

Curated

“The best part of Twitter is that I’m connected with people who have the

same interest and knowing that the links they share have been

prescreened by them.”

43

Why Do You Use LinkedIn?

Professional focus

Exchange of ideas in a specialized group

Potential for networking

Learn about opportunities

“Keeps me somewhat updated on activities,

topics of interest to me”

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What Else?

Google+

YouTube

Tumblr

Instagram

Wikipedia

Blogs

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46

What Do You Share?

Content Basics

Keep it short

Find your voice

Share what you know & are passionate about

5

Content Basics

Switch up your content Ask questions

Photos and videos

Facts or trivia

Respond

Identify yourself as an ambassador Not unbiased commenter – identify yourself

Remind people that you are not a PCORI representative

Do not respond on behalf of PCORI Our Communications team manages these interactions. Please refer

them to us.

5

Promoting PCOR

Principles: An Organizational

Ambassador’s Perspective

PCORI Ambassador Annual Meeting:

Connecting a PCOR Community

June 19, 2014

K. Kimberly McClearyDirector of Strategic Initiatives

FasterCures

What is FasterCures?

FasterCures is an “action tank” driven by a

singular goal – to save lives by speeding up and

improving the medical research system.

A center of the Milken Institute, we are a nonprofit

and nonpartisan organization that works with all

the sectors of the medical research and

development ecosystem.

Bringing a new discovery from lab to

market is a long, expensive and risky

process

FACILITATE COLLABORATION between all of the players in the research

ecosystem

FOSTER INNOVATION to find and elevate novel solutions that translate

scientific knowledge into life-saving cures

ENSURE PRODUCTIVITY to develop unbiased, analytical assessments of

some of R&Ds most thorny issues & antiquated policies

EXPAND INVESTMENT for high-risk, long-term investments needed to turn

medical innovations into lifesaving therapies

What we do

Strong alignment of PCOR Principles

Direct patient participation in drug

development is limitedGraphic courtesy of CHRISTUS Stehlin Foundation for Cancer Research

One patient

representative

appointed by FDA to

advisory committee

that reviews NDA

What does industry know about

patient preferences?Graphic courtesy of CHRISTUS Stehlin Foundation for Cancer Research

Industry sponsors barred from activities

that could be perceived as pre-approval

marketing; confusion about how to engage

with patients & when it’s permissible pre-

approval

What FDA understands about patients’

experiences may influence its risk tolerance

“Proactive” interest in patient perspective is

expanding

Industry sponsors are building patient

perspectives into the “unmet need” case for

access to expedited regulatory pathways

Patient preferences are also informing

sponsors’ reimbursement strategy

FDA is directly

seeking patient

input on what

symptoms they

would most like

resolved

PDUFA-V enhances patient input

“Reimbursable label” is new holy grail

FasterCures’ TRAIN Network

These organizations are fully invested in

shaping product development and ensuring

access to meet patient expectations & needs

Registries ▪ Clinical Trials Networks ▪

Biorepositories ▪ Funding

http://train.fastercures.org/

Goal: Integrate PCOR

principles across the cure

to care continuum

@fastercures

Kim McCleary

Director of Strategic Initiatives

Email: [email protected]

Twitter: @KimTweetsDC

mailto:[email protected]

Patient and Family

Engagement Rubric

Suz Schrandt, JD

Deputy Director of Patient

Engagement


66

Why develop a rubric?

• The rubric is a response to frequent questions from the patient and research communities asking what we mean by “engagement in research.”

What is the rubric?

• The rubric provides a variety of options for incorporating engagement, where relevant, into the research process.

How will the rubric be used?

• The rubric will be used as a guide for applicants, merit reviewers, awardees and Engagement Officers.


Rubric Development Process and

Implementation

67

PEAP provides recommendations to PCORI Engagement staff on rubric development (September 20th , 2013)

PCORI Engagement staff to review and refine with Scientific Program Directors and Executive Committee (November 2013)

PCORI Engagement to review refined rubric with PEAP (December, 2013)

Rubric utilized in funding application (January/February , 2014), merit review and awardee training as well as establishment of engagement milestones and oversight of portfolio by Program and Engagement Officers

Rubric will ultimately be defined and re-defined by the community of researchers, patients, caregiver and advocacy organizations


Rubric Launch

The rubric is intended to provide guidance to applicants,

merit reviewers, awardees, and engagement/program

officers (for creating milestones and monitoring projects)

regarding patient and family engagement in the conduct

of research. It is divided into four segments:

Planning the Study

Conducting the Study

Disseminating the Study Results

PCOR Engagement Principles


Rubric: Planning the Study

Planning the StudyFormulating Research

Questions and Study Design

Patient partners participate in:

Identifying the topic and developing the

research question to be studied.

Creating the intervention to be studied (if

applicable) and identifying comparators.

In identifying the goals or outcomes of the

interventions to be studied.

Defining essential characteristics of study

participants.

Other study design and preparation.

Examples:

Epilepsy study: the patients and parents of patients with epilepsy

pose the question: which anti-epileptic drugs best preserve

sufficient cognition to go to work or school and function normally,

while still preventing seizures adequately?

Asthma study: the patients and patients' parents help create the

paper asthma tracker tool being compared to the e-asthma

tracker tool.

Cancer study: patient partners determine that all women with

breast cancer would be eligible versus only women who had

completed active treatment.

How can you demonstrate this in your proposal?

Provide letters of support from patient partners that clearly

describe the origin of the study topic, the role of the patient

partners in defining the question, outcomes, comparators, and

goals/outcomes, etc.

Include the patient partners in all relevant sections of the

application, such as the biosketches, the budget, and the

dissemination and implementation assessment.

Avoid relying entirely on patient partners who have dual roles on

the project, e.g., relying on stakeholders or researchers who also

happen to be patients. Including one or more patient partners

who have no other role on the project is important.

Formulating Research

Questions and Study DesignPatient partners participate in:

• Identifying the topic and developing the

research question to be studied.

• Creating the intervention to be studied (if

applicable) and identifying comparators.

• In identifying the goals or outcomes of the

interventions to be studied.

• Defining essential characteristics of study

participants.

• Other study design and preparation.

Patient Engagement in Developing the

Research Question


Rubric: Conducting the Study

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Conducting the StudyParticipating in

and monitoring

the conduct of

the project

Patient partners participate in

and monitor the conduct of the

research project.

Examples:

Chronic pain study: the informed consent document is developed with patient partners to make it understandable to

study participants.

Epilepsy study: patient (and parents of patient) partners suggest that an adult survey tool be adapted for children to

answer, and they help develop one.

Depression study: patient partners advise researchers to substitute the term, “emotional well-being,” for the term,

“mental health,” to enhance the recruitment of study participants.


Provide letters of support from patient partners that clearly describe the role of the patient partners in conducting and

monitoring the study.

Clearly articulate in the application the roles of the patient partners in each component of the study, (e.g., helping to

draft survey tools and focus group questions, reviewing participant materials for readability, etc.), including the

dissemination and implementation assessment.


the recruitment and data

collection from the study

participants, when appropriate.

Examples:

Depression study: patient partners are trained to go out into the community to recruit study participants and to

conduct interviews with them.

Example:

Depression study: patient advocacy groups assist with recruitment through their patient networks—the “book club”

model.


Provide letters of support from patient partners that clearly describe the role of the patient partners in interacting with

study participants, if appropriate.

Clearly articulate in the application the roles of the patient partners in interacting with study participants (e.g.,

recruiting participants, conducting interviews, leading focus groups, etc.).

The research team, including

patient partners, participates in

all potential evaluation

activities of patient

engagement.

Example:

ER study: The PI regularly asks the patient partners if they feel that they are truly involved in the research and if they

think that their involvement is contributing to the research.


Include in your application a plan for “check-ins” with patient partners to monitor their perceptions of the extent to

which a) they are meaningfully involved in the study and b) their participation is contributing to the study.

Also include a plan for “check-ins” with the other research team members to monitor their perceptions of the extent to

which a) patient partners are meaningfully involved in the study and b) their participation is contributing to the study.

Participating in and monitoring

the conduct of the project


and monitor the conduct of the

research project.

Patient Engagement in Data Collection

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Rubric: Disseminating the Study Results

Disseminating the Study ResultsHelping to plan the

dissemination of the study’s

results.

Patient partners are involved in plans for

disseminating the study’s findings to patient,

stakeholder, and research audiences so that

the findings are communicated in

understandable, usable ways.

Examples:

Chronic pain study: patient partners co-author manuscripts,

present at scientific and lay conferences, and share study

findings through their networks.

Cardiac study: a Patient Dissemination Board is helping to

craft the dissemination plan and advise the research team

on how to best share study findings.


Provide letters of support from patient partners that clearly

describe the role of the patient partners in planning the

dissemination of the study’s results.

In the application, clearly identify the role of patient

partners in planning the dissemination of the study’s

findings.

Helping to plan the dissemination of

the study’s results.

Patient partners are involved in plans for

disseminating the study’s findings to patient,

stakeholder, and research audiences so that the

findings are communicated in understandable,

usable ways.

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Rubric: PCOR Engagement Principles

PCOR Engagement PrinciplesReciprocal Relationships The roles and decision-making authority

of all research partners, including patient

partners, are clearly stated.

Examples:

Many applications state that patient partners are co-

investigators, and that decisions about the study are

made by consensus among all the research project

partners.

Many applications describe patient partners as key

personnel, and their biosketches illustrate how the

skills and experiences of the patient partners prepare

them to function effectively in this role.

Reciprocal Relationships

The roles and decision-making

authority of all research partners,

including patient partners, are

clearly stated.

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Reciprocal Relationships

75


PCOR Engagement PrinciplesCo-learning The application includes plans to ensure

that the patient partners will understand

the research process and the researchers

will understand patient centeredness and

patient engagement.

Examples:

Training and educational opportunities are provided

such as patient partner training in human subjects

protection.

Training is provided by patient advocacy

organizations, patient/survivor, and clinician/caregiver

for the researchers providing the intervention (e.g.,

training in better communication with patients, led by

patient instructors).

Co-learning

The application includes plans to

ensure that the patient partners

will understand the research

process and the researchers will

understand patient centeredness

and patient engagement.

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PCOR Engagement PrinciplesPartnership Time and contributions of patient partners

are valued and demonstrated in fair

financial compensation, as well as

reasonable and thoughtful time

commitment requests.

When the patient partners represent

unique populations, the research team

proposes to accommodate their cultural

diversity and/or disability.

Examples:

Compensation for patient partners is included in the

budget at market rates for consultants.

In a study focused on a Latina population, several

members of the research team are Hispanic and fluent

in Spanish.

In a project with a patient partner with a disability, the

research team selects sites for team meetings that are accessible.

Partnership

Time and contributions of patient partners are

valued and demonstrated in fair financial

compensation, as well as reasonable and

thoughtful time commitment requests.

When the patient partners represent unique

populations, the research team proposes to

accommodate their cultural diversity and/or

disability.

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Co-learning

78



Trust, Transparency,

Honesty

a) Major decisions are made inclusively

and information is shared readily with all

research partners,

b) Patient partners and research partners

express commitment to open and honest

communication with one another.

c) The study team commits to

communicate the study’s findings back to

the study community in a meaningful and

usable way.

Example:

Commitments to trust, transparency, and honesty are

stated in many applications – and supported by

descriptions of how the research team will

communicate with each other frequently, and make

decisions about the study by consensus.

Trust, Transparency, Honesty

• Major decisions are made inclusively and

information is shared readily with all

research partners,

• Patient partners and research partners

express commitment to open and honest

communication with one another.

• The study team commits to communicate

the study’s findings back to the study

community in a meaningful and usable way.

79

In the Application

Planning the Study

Conducting the Study

Disseminating the Study Results



Education and Training

Town Hall meetings (Broad and Targeted PFAs)

Presentations to key stakeholders (Drug Information

Association/PCORI webinar, IOM roundtable and NIMH)

Rubric is or will be incorporated into

Merit Review training and process

Ambassador Program training

PFA applicant and awardee training

Pipeline to Proposal applicant and awardee training


Engagement Officers

Helping Awardees to outline engagement milestones

Participating in the Awardees' kick-off and interim phone calls as

well as in separate calls with key patient and stakeholder partners

Facilitating communication between Awardees to troubleshoot

engagement challenges

Gathering promising engagement practices from the portfolio to

feature in webinars and for use in updating or expanding the Patient

and Family Engagement Rubric

Engagement Officers, working closely with Program Officers, will support active portfolio management by;


Next Steps

Identify opportunities for presentations and publications to patient,

researcher, and other stakeholder audiences

Seek feedback from applicants and merit reviewers and make revisions to the

rubric as necessary

Explore mechanisms for outlining stakeholder engagement in a similar tool

Revise and expand rubric via multiple sources of input

Evaluation:

Evaluate the effectiveness of the rubric

Evaluate the role and function of the EOs


Program Timeline

84

Task Timeline

Welcome Inaugural Ambassadors – Patient

Engagement Advisory Panel

Saturday, September 21, 2013

Invite workshop attendees, advisory

panelist, merit reviewers, and PCORI

funded project partners to join the PCORI

Ambassador Program

September 24- October 1, 2013

Development and release of PCOR

Science Training

November 2013

Conduct six-month program evaluation Spring 2014

First annual meeting Spring 2014

Release of additional PCOR Science

Training

Summer 2014

Conduct one-year program evaluation Fall 2014

Group Photo and Lunch12:00-12:30 PM

.


pcori ambassador annual meeting: connecting a pcor … · relationship toward patient-centered...

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