“real” care coordination as a pathway to family-centered · pdf...

“Real” Care Coordination, a Pathway to Family-Centered Care

Jeanne W. McAllister, Associate Research Professor Pediatrics IUSM Children’s Health Alliance of Wisconsin Conference; November 15, 2016

Today’s Priorities: Studied Implementation of Care Coordination (CC)

1) Describe (“real”) care coordination, how it meets the bio psychosocial needs of children/families w/ special needs

2) Outline key steps necessary/beneficial for studied implementation of care coordination best practices

3) Relate CC approaches to 2 vignettes / shared plans of care;

Identify key child/youth, family, and clinician goals & applied strategies; progress against goals; and lessons learned.

4) Relate CC (& care/case management) to the Triple Aim

Family of a child with a chronic health care condition:

“If you can bring us real care coordination,

you will have saved our family”.

Ever go to hear a favorite author speak? One perspective

Impact • Family • Professionals • System

“REAL” Care Coordination

Fidelity to

Best Practice Model:

Is it/Does it…?

Family-Centered

Assessment driven

Continuous

Team-based

Bio psychosocial needs

Skill Building

Recommendations – Family-Centered Care Coordination/Shared Plan of Care (SPOC)

Achieving a SPOC w/CYSHCN & Families

Principles 1) Patients & families are central

and engaged

2) Teams are enabled/supported to help create/use SPOC

3) Health care and community professionals efforts are integrated

4) Cross system family-centered care coordination is sustained

McAllister J. Achieving a Shared Plan of Care with Children and Youth with Special Health Care Needs:

A White Paper and Implementation Guide. Lucille Packard Foundation for Children's Healthcare;2014

Ten Steps to Achieving a Shared Plan of Care (SPOC) 1. Identify who will benefit from a shared plan of care (SPOC) 2. Discuss with families and colleagues the value of developing and using

a comprehensive and integrated shared plan of care. 3. Select, use and review a multi-faceted assessment with each child, youth

and family 4. Set shared personal family as well as clinician goals 5. Identify other needed partners (e.g. subspecialists, and community

providers) and link them into the planning process 6. Develop the plan of care “Medical Summary” section 7. Establish the plan of care “Negotiated Actions” (goals and strategies)

portion 8. Ensure that the SPOC is available, accessible, and retrievable (permissible

partners) 9. Provide tracking, monitoring and oversight for the SPOC 10. Systematically use the SPOC model process with a group of patients and

families

Ten Steps to Achieving a Shared Plan of Care; Source: Lucile Packard Foundation for Children’s Health; Achieving a Shared Plan of Care with Children with Special Health Care Needs and their Families www.http://www.lpfch.org/sites/default/files/field/publications/achieving a_shared_plan_of_care_full.pdf

http://www.http/www.lpfch.org/sites/default/files/field/publications/achieving

http://www.http/www.lpfch.org/sites/default/files/field/publications/achieving

RCCP team took following steps to move toward REAL care coordination

Win institutional support to implement and study a best practice model of CC

Assemble, cultivate and activate an interdisciplinary family-centered CC team

Apply improvement science to all processes and tools

Provide SPOC related support to all “care neighborhood” partners

DREAM - Integrate model CC elements into the local context of ongoing healthcare delivery

Team

Using Care Coordination Pilot, Team, Efforts as a continuous Learning Organization/Opportunity

SPOCS; Jan 2015-July 2016; n=235

• Target Population CSHCN

2-10 years old w/neurodevelopmental diagnosis followed in Riley Hospital (NDBS) sub specialty programs

• SPOC captures child/family; medical summary and goals with progress against goals

• SPOC tool as standard of care and educational instrument for “care neighborhood”

Jan 2015-Present

Shared Plan of Care (SPOC) In Place Standard of Care (AMCHP) 18 Months

0

50

100

150

200

250

Jan-15 April July October Jan-16 April July

Structure &

Flexibility

“They moved my bowl.”

1. Family Outreach &

Engagement

Referral, criteria met, accept

Communicate family/inform and

consent

Registry entry/documentati

on

Referral and Primary Care

Communication

2.Family/Team Readiness &

Pre-Visit Work

Pre-visit Contact

Family : CC

Trust/rapport Assessments &

Measures

Medical summary & goal information

Relationship building

3. Population care and

Teamwork

Huddles data review,

questions

Prepare to meet basic needs for

visit

Consult experts, research needs

Population - review clinical &

system challenges

4Planned Care Visits/SPOC

Co-Production

Develop rapport/“what matters”; visit

structure

Integrate bio-psychosocial &

medical

Frame goals/negotiated

actions (SPOC) Complexity level

Strategies to meet goals, draft SPOC

5.Ongoing CC & Community

Transfer

Share/use plan of care, address

accountabilities

Communicate w/primary care &

other partners

Follow-up, track, monitor & measure

3-6 months of CC, readiness for local

“locus of CC” transfer

RCCP: Testing and Refining the Shared Plan of Care (SPOC) as an Approach to Family-Centered Care Coordination (CC)

Care Coordination is a patient & family-centered, assessment driven, continuous, team-based

activity designed to meet the bio-psychosocial needs of children and youth, while enhancing

person & family care-giving skills and capabilities.

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Engagement



consent


on


Communication


Pre-Visit Work


Teamwork


Co-Production


Transfer





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Engagement


Pre-Visit Work

Pre-visit Contact

Family : CC


Measures




Teamwork


Co-Production


Transfer





P

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A


Engagement


Pre-Visit Work


Teamwork


questions

Prepare to meet basic needs for visit



system challenges


Co-Production


Transfer





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Engagement


Pre-Visit Work


Teamwork


Co-Production


structure


medical





Transfer





P

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Engagement


Pre-Visit Work


Teamwork


Co-Production


Transfer


accountabilities


other partners






activity designed to meet the bio-psychosocial needs of children and youth, while enhancing person & family care-giving skills and capabilities.

P

D

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A

Shared Plan of Care:

Evolution Frame & form

About Me 20%

Medical Summary

40%

Negotiated Actions

40%

STEPS

• Identify/agree

• Outreach/Assess

• Understand and Prioritize “

Goals”

• Strategize Approaches

• Use SPOC

• Communicate & collaborate

• Build Skills

- Family

- Team

VIGNETTE #1 “BV”

• About Me • Medical Summary • Negotiated Actions Outcomes:

About Me

Medical Summary

Negotiated Actions

1.

Family Outreach &

Engagement

2.

Family/Team Readiness &

Pre-Visit Work

3.

Population care and

Teamwork

4.

Visits/SPOC Co-

Production

5.

Ongoing CC &

Community Transfer

11/13/2016 23

VIGNETTE #1 “About Me” (1-3) Pre Visit Contact & Preparation for visit • BV is a 3 yr.. boy attached to loving parents (Burmese

refugees) and baby sister who is on the brink of language and mobility (he comes with an ASD diagnosis, meets age criteria and is referred by a Riley specialist)

• Limited English, no transportation, dependent upon father (who has no paid time off) to navigate American health care system

• Pre visit - Medicaid cab, interpreter, known clinician as part of team

J– Family from Burma; speak Hakha Chin and require very specific interpretation

J has - Global Developmental Delay; gross motor delay; & expressive language delay

“Planned Care Visit” (4) Mother, father, BV, baby sister, Chin interpreter, care coordinator and clinician MEDICAL SUMMARY – Pre-Populated, completed in real time NEGOTIATED ACTIONS “Critical Conversation” – 1) Obtain outpatient habilitation therapy within limits of family’s schedule & transportation needs 2) Better understanding BV’s needs & Rxs 3) Support to navigate evaluations/treatments 4) Establish adequate health care financing Ongoing Care Coordination (5) Team and family work to integrate care, communication and financial needs (ISDH/CSHCS, BDDS, Children’s Hospital, etc.) Shared Plan of Care translated into Chin for all permissible partners

BV Outcomes

1. Accessed options for therapeutic interventions that meet the families location, transportation and schedule needs

2. Achieved recommended subspecialty consults (e.g. neurology, genetics)

3. Family skills - learned to initiate contact with language line to maintain communication with the care team

4. Locus of care coordination transitioned/reemphasized with PCP/nurse team at FQHC medical home

- Learning Partnership

- Accessing interventions / resources previously unknown - Holding planned care visits w/ additional patients/families

1.

Family Outreach &

Engagement

2.

Family/Team Readiness &

Pre-Visit Work

3.

Population care and

Teamwork

4.

Visits/SPOC Co-Production

5.

Ongoing CC & Community

Transfer


Vignette 2 “Patrick O.”

Patrick O – About Me

Enjoys

Loving 8 yo, often in good mood

Likes to play by self, enjoys Sponge Bob and Angry Birds

Sings, calendar time at school

Self care - partial skills

Some speech; little back/forth

Other Insights

Little eye contact

Avoid touching, changing routine

Dislikes messy play, teeth brushing

Walks, uses wheelchair for waning stamina

Family system complex; flexibility limited

PDSA: Clinician Observation: Repetitive play, will let you join and take a turn

Planned Care Visit / SPOC

MEDICAL SUMMARY

Multiple medical needs: autism, mitochondrial disorder, cardiac involvement,

14 Specialties involved

NEGOTIATED ACTIONS

Therapies, in line with needs and payment

Navigate home health options/fit with child care needs

Therapeutic adaptive recreational opportunities

Other clinician – integration, waiver, behavioral supports/visual aids, safety, PCP collaboration

Outcomes

Goals

Completed

In Progress

On hold

Dropped

Implications for Care of Population Family Goals - Coding Categories /Guidelines

1. Getting the Right Interventions and Treatments

2. Paying for HealthCare and Related Needs

3. Quality of Family Life

4. Meeting Basic Needs

5. Getting an Appropriate Education

6. Understanding Diagnosis & Treatments

7. Access and Communication Across Complex Systems of Care

Implications for Care (235 Families; 1,378 Goals)

Monthly Measures (CC)

Top Care Coordination Interventions

Promoting:

Development/use of Shared Plan of Care

System cohesion/alignment of approach

Access and linkages to care & resources

Top Care Coordination Interventions

Preventing:

Delay of treatments & interventions

System fragmentation/redundancy

Excessive family burden (financial, worry)

Family Feedback

“No one asked these questions prior”

“I have never had a visit like this before”

“I have felt so alone in this, care coordination has opened my mind; I now know how to use the many special services available to our son” (Father).

Team Feedback

“I have spent a lifetime learning evidence-based strategies for children and families; the constraints of our payment system prevent me from ensuring that families access best practices and optimal services.

“I am selfish, I really like seeing my patients get care coordination, I want them to get help accessing services that I can just recommend

“Learning family goals & using them to drive CC is better, I cannot go back to working the way I did before” (CC)

Family Experience of CC Survey-Early Data Significant shifts (statistically valid)

Care coordinator

Confidence

Problem solving

Family life in control

Understand child

Able to ask for help

Understand disorder

Know service needs

Understand service system

Hours spent CC lowered

Satisfied w/communication

Worry reduced

--Close to significance--

Therapies (ABA, play)

Respect family Rx choices

Progress Against Goals

Completed

In progress

On hold

Dropped

At “exit” goals are evaluated

75% indicating either achieved or in progress

(“In Progress”)

Life is simpler with a map!


Engagement



consent


on


Communication


Pre-Visit Work

Pre-visit Contact

Family : CC


Measures




Teamwork


questions


visit



system challenges


Co-Production


structure


medical





Transfer


accountabilities


other partners






activity designed to: meet the bio-psychosocial needs of children and youth, while enhancing person & family care-giving skills and capabilities.

P

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S

A

P

D

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A

P

D

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A

P

D

S

A

P

D

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A


Engagement



consent

Registry entry & documentation


Communication


Pre-Visit Work

Pre-visit Contact

Family : CC


Measures




Teamwork


questions


visit



system challenges


Co-Production


structure


medical





Transfer


accountabilities


other partners






activity designed to: meet the bio-psychosocial needs of children and youth, while enhancing


P

D

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A

P

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A

P

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A

P

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A

P

D

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A


Engagement



consent


on


Communication


Pre-Visit Work

Pre-visit Contact

Family : CC


Measures




Teamwork


questions


visit



system challenges


Co-Production


structure


medical





Transfer


accountabilities


other partners








P

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A

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Shared Plan of Care: Evolution

8 X 8 X

Frame and form

Components

About Me 20%

Medical Summary

40%

Negotiated Actions

40%

SPOC EVOLUTION


Engagement



consent


on


Communication


Pre-Visit Work

Pre-visit Contact

Family : CC


Measures




Teamwork


questions


visit



system challenges


Co-Production


structure


medical





Transfer


accountabilities


other partners







person & family care-giving skills and capabilities. .

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Engagement

BROCHURE

REFERRAL FORM

REGISTRY


Pre-Visit Work

WHAT I NEED

EXPERIENCE OF CC SURVEY

SPOC EXAMPLE


Teamwork

TEAM MEETINGS

HUDDLES

STRUCTURES & PROCESSES

ROLES


Co-Production

VISUAL TO FRAME TIME

GOAL EXAMPLES

SPOC INTERATIONS

COMMON LANGUAGE


Transfer

SPOC

LETTERS

EXITS / RE-ENROLL

TEMPLATES (REPETITION)


TOOLS CREATED IN REAL TIME AS PART OF STUDIED IMPLEMENTATION AND QUALITY IMPROVEMENT

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Lessons Learned in Studied Implementation

Individual needs, styles

Care and feeding of a team

Expectations with accurate understanding of CC

Testing and improving

(vs. “please do x, y and z”)

Patient care and data

People & Process & Tools

Declaring a Definition and Model

Care Coordination

Care Management

…Somewhat a Matter of Linguistics ?

Who is CC for?

Is it defined, how?

Evaluation of implementation?

Getting to Real Care Coordination

Care Coordination is a patient & family-centered, assessment driven, continuous, team-based activity designed to: meet the bio-psychosocial needs of children and youth, while enhancing person family care-giving skills and capabilities.

Case management is a collaborative process of assessment, planning, facilitation, care coordination, evaluation, and advocacy for options and services to meet an individual’s and family’s comprehensive health needs through communication and available resources to promote quality, cost-effective outcomes.

Case Management Society of America

Care management (CM) is a promising team-based, patient-centered approach “designed to assist patients and their support systems in managing medical conditions more effectively

Centers for Healthcare Strategies Inc., 2007).

Focus - Care Coordination

Care Coordination, using a Shared Plan of Care

approach, holds the potential to:

Improve child health outcomes,

Reduce family burden, increase skills, and

Lower system costs (over the child’s life course).

In other words, address the triple aim (Berwick)

11/13/2016 52

“Turn Key” Care Coordination?

Care Coordination Elevator Speech?

Care coordination “elevator speech”?

“With care coordination…you

have to take the stairs!

(1-2 steps at a time)

People

Process Tools

+ Implement-

ation

+ Learning

Real Care Coordination

References

① Association of Maternal and Child Health Programs, Standards for Systems of Care for Children and Youth with Special Health Care Needs, Antonelli, R.J., McAllister, J., & Popp, P. (2009). Making care coordination a critical component of the pediatric health care system: A multidisciplinary framework. New York, New York: The Commonwealth Fund. Standards

② American Academy of Pediatrics Council on Children with Disabilities and Medical Home Advisory Committee. (2014). Patient and family centered care coordination: A framework for integrating care for children and youth across multiple systems. Pediatrics, 133(5), e1451-e1460. Definition

③ Antonelli, R.J., McAllister, J., & Popp, P. (2009). Making care coordination a critical component of the pediatric health care system: A multidisciplinary framework. New York, New York: The Commonwealth Fund. Framework

④ McAllister, J.W. (2014). Achieving a shared plan of care with children and youth with special healthcare needs: White paper and implementation guide. Lucile Packard Foundation for Children’s Health. Retrieved from http://lpfch-cshcn.org/publications/research-reports/achieving-a-shared-plan-of-care-with-children-and-youth-with-special-health-care-needs/ Model

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

































“real” care coordination as a pathway to family-centered · pdf...

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