AcademyHealth: Role of Consumers in Healthcare Advocacy

Engagement, Empowerment, Enhancement:

Graphic:  Flip  the  Clinic  

The Role of Consumers in Health Care and Advocacy

Your team for today’s discussion: S. Whitney Bowman-Zatzkin, MPA, MSR Director, Flip the Clinic [email protected] | @MsWZ Thomas Workman, Ph.D. Principal Researcher, American Institutes for Research [email protected] Claire Brindis, Dr.P.H. Director, Philip R. Lee Institute for Health Policy Studies Professor, Pediatrics and health Policy Director, Bixby Center for Global Reproductive health Executive Director, Adolescent and Young Adult Health, National Resource Center [email protected] Amanda Otero Health Care Organizer, TakeAction Minnesota [email protected]

Paving the Road for Patient and Family Engagement

Thomas  Workman,  Ph.D.  Kris2n  L.  Carman,  Ph.D.  American  Ins2tutes  for  Research  

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Kris%n  L.  Carman,    Pam  Dardess,    Maureen  Maurer,    Shoshanna  Sofaer,  Karen  Adams,    Chris%ne  Bechtel  and    Jennifer  Sweeney    (2013).  Pa%ent  And  Family  Engagement:  A  Framework  For  Understanding  The  Elements  And  Developing  Interven%ons  And  Policies.  Health  Affairs  32(2),  223-­‐231      

8 change strategies

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Using the roadmap

•  Catalyze efforts – 5 Simple Actions

•  Organize current work, identify opportunities for pushing further

•  Unify efforts and identify opportunities for partnerships

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The  power  of  [the  roadmap]  will  only  be  fully  realized  when  everyone  takes  ac%on.  Only  then  will  we  realize  the  power  of  shared  goals  and  partnerships.  Only  then  will  we  discover  the  power  of  the  pa%ent  at  the  center  of  healthcare.”  

-­‐  SUE  COLLIER    Clinical  Content  Development  Lead  

American  Hospital  Associa%on/Health  Research  Educa%onal  Trust  

Community and partnership

•  Download and share the roadmap www.patientfamilyengagement.org #PFEroadmap

•  Make a commitment www.patientfamilyengagement.org/commitments

•  Share a resource www.patientfamilyengagement.org/resources

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Let us know how we can help

Kristin L. Carman, PhD Vice President, Health and Social Development Program

American Institutes for Research 202-403-5090, [email protected]

Thomas Workman, Ph.D.

Principal Researcher, American Institutes for Research 301-592-2215, [email protected]

Pam Dardess, MPH

Principal Researcher, American Institutes for Research 919-918-2311, [email protected]

AIR’s Center for Patient & Consumer Engagement www.aircpce.org

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Strategies and Tactics for Achieving Meaningful Consumer Engagement in Health Care Claire D. Brindis, Dr. PH., Dana Hughes, Dr.PH, Laura Schmidt, Ph.D., Laurie Jacobs, Ph.D., Caitlin Kennedy, Ph.D. Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco

June 13, 2015

ACA & Consumer Engagement

•  ACA & patient-centered care –  Hospital Consumer Assessment of Healthcare

Providers and Systems (HCAHPS)

•  ACA & consumer engagement in system redesign

–  CMS’ state demonstrations to integrate care for dual eligible patients

–  CMMI’s testing of new service & delivery models

•  Role of advocates in consumer engagement

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CAMPAIGN FOR BETTER CARE

Community Catalyst

PICO National Partnership for Women & Families

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Atlantic Philanthropies‘ Campaign for Better Care

Ultimate goal: Better quality care, better patient experiences with care and more affordable care for low-income older adults and other vulnerable populations Strategy 1: •  Design and test models of consumer engagement in institutional decision-making which assure the inclusion of the perspectives of vulnerable populations and their families (and result in the ultimate goal) Strategy 2: •  Identify methods to sustain this work over time

A Multidimensional Framework for Patient and Family Engagement in Health and Health Care

Levels of

Engagement  

Consultation    

Involvement     Partnerships &

Shared Leadership              

Direct Care  

Patients receive information  

Patients asked about treatment preferences  

Decisions based on patients’ preferences, medical evidence, &

clinical judgment  

Organizations design &

governance  

Organization surveys patients about care

experiences  

Hospital involves patients as advisors or advisory council

members  

Patients co-lead hospital safety & quality

improvement committees  

Policy Making  

Policy agency’s focus groups ask patients about health care

issues  

Patients’ research priorities used by public agency in

funding decisions  

Patients equally represented on agency committee deciding how

to allocate health program resources  

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Continuum of Engagement

Carman KL, et al. S. Patient and Family Engagement: A Framework For Understanding The Elements And Developing Interventions and Policies. Health Affairs 32 (2013)

A Multidimensional Framework for Patient and Family Engagement in Health & Health Care

Levels of

Engagement  

Consultation    

Involvement     Partnerships

& Shared Leadership              

Direct Care  

Patients receive information  

Patients asked about treatment preferences  

Decisions based on patients’ preferences, medical evidence, &

clinical judgment  

Organizations design &

governance  

Organization surveys patients about care

experiences  

Hospital involves patients as advisors or advisory council

members  

Patients co-lead hospital safety & quality

improvement committees  

Policy Making  

Policy agency’s focus groups ask patients about health care

issues  

Patients’ research priorities used by public agency in

funding decisions  

Patients equally represented on agency committee deciding how

to allocate health program resources  

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Continuum of Engagement

Carman KL, et al. S. Patient and Family Engagement: A Framework For Understanding The Elements And Developing Interventions and Policies. Health Affairs 32 (2013)

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Centers  for  Medicare  and  Medicaid  Services  

State  Demonstra%ons  to  Integrate  Care  for  

Dual  Eligible  Individuals  

Primary  Care  Transforma%on  

Ini%a%ves  to  Speed  Adop%on  of  Best  

Prac%ces  Accountable  Care   Health  Care  

Innova%on  Awards  

Comprehensive  Primary  Care  Ini%a%ve  

Partnerships  for  Pa%ents   Pioneer  ACOs  

Community  Catalyst   Na4onal  Partnership  for  Women  &  Families   Rutgers  /PICO  

Community Catalyst

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• Work to build a nationwide network of local & state health advocacy organizations & coalitions

• Share expertise via technical assistance

Organizational Focus

• Shape state policy development & implementation to incorporate consumers

•  Institutionalize consumer involvement in state policy & provider/health plan activities

Primary Campaign for Better Care

Goals

• Support state advocates

• Setting: Urban & rural communities & state capitols

Campaign for Better Care Approaches

National Partnership for Women and Families

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• Advocate at the federal level for policies & laws that help women & families

• Support effective implementation at local & state levels

Organizational Focus

• Support implementation of consumer engagement provisions for hospitals, primary care practices, & ACOs

Primary Campaign for Better Care

Goals

• Provide technical assistance/consultation to CMMI & providers

• Setting: Localities where CMS demonstrations are taking place

Campaign for Better Care Approaches

PICO

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• Utilize faith-based community organizing to address problems & concerns within congregations & communities based on shared values

Organizational Focus

• Empower consumers at the local level to improve individual & community health/well- being

• Achieve Medicaid savings for high utilizers & return savings to local communities

Primary Campaign for Better Care

Goals

• Engage in community organizing among Hot Spotter patients & community members

• Direct patient support as part of care management

• Setting: Communities served by local participating PICO federations

Campaign for Better Care Approaches

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Slide Title. Arial Bold, 32pt Approaches to Consumer

Engagement Community

Catalyst National

Partnership PICO

Consumers serve on decision-making bodies

Creation of formal mechanisms for obtaining consumer feedback on health services & health service needs Technical assistance on decision-making bodies, other engagement techniques

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Slide Title. Arial Bold, 32pt Approaches to

Consumer Engagement Community

Catalyst National

Partnership PICO

State-level oversight bodies that include consumers & their advocates

Standards, regulations, & monitoring approaches that best serve the interests of consumers.

Consumer use of programs that help individuals & family caregivers be more engaged in their health

Facilitate consumers and their advocates in conversations with policymakers (state & federal)

Tactics and Strategies Implemented to Increase Consumer Engagement

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Slide Title. Arial Bold, 32pt Tactics Community

Catalyst National

Partnership PICO

Federal advocacy

State advocacy

Technical Assistance

Information sharing/learning networks

Community Organizing

Coalition building

Training

Strategy/Tactic #1: Educate, Engage & Influence Federal & State Policy Makers to Incorporate Consumers’ Needs & Interests into Policy

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Strategy/Tactic #2: Actively Engage Consumers in Decision Making & Ensure Their Perspective is Heard

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Strategy/Tactic #3: Engage Health Plans & Providers to Genuinely Involve Consumers in Decision Making

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Strategy/Tactic #4: Engage With Other Organizations to Act Collectively in Support of Consumer Engagement

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Lessons Learned

What matters: •  Flexibility •  Relationships •  Opportunities for collective learning •  Focus on both the system & local level

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Lessons Learned (continued)

Other Essential Ingredients: •  Provider/clinician investment and

commitment •  Consumer engagement recognized as a

vital component of system reforms

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Lessons Learned (continued)

Common challenges: • Consumer health literacy • Health care system’s complexity • Fear of feasibility of changes • Lack of buy-in by professionals

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Implications & Future Questions

•  For advocates: –  Does consumer engagement make a difference?

•  For evaluators & researchers:

–  The need for: •  Metrics •  Sustainable & scalable models

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Leveraging Engagement: Policy Change

Amanda  Otero  Health  Care  Organizer,  TakeAc2on  Minnesota  

•  Among  the  most  comprehensive  public  coverage  

 •  Among  the  highest  insured  rate  (95%)  

 •  Lowest  premiums      •  Highest  deduc2bles  

Minnesota  

What Advocacy Made Possible: The 9 Lives of Minnesota Care

October  19,  2012,  St.  Paul  Pioneer  Press,  Front  Page  

•  You want to plan around people’s priorities, needs, preferences.

•  You want to understand if/how your plan will impact people.

•  You need to simplify complex information for patients or the public.

•  You need policy or funding to achieve your HST goals.

You might need consumers/advocates if…

Where can I find them?

•  Patients •  Community organizations •  Advocacy organizations •  Everywhere!

Deep Dive

Graphic:  Flip  the  Clinic  

Key Points

IMAGE

•  Be mindful of your gift to/for others in healthcare

•  Consumers and clinicians should be flexible, creative, and maintain a spirit of adventure

•  Huge gains are possible

•  Be bold

•  Patients and clinicians have permission to experiment, inform, and explore healthcare together.

Graphic:  Flip  the  Clinic  

Thank you!

Graphic:  Flip  the  Clinic  

S. Whitney Bowman-Zatzkin, MPA, MSR Director, Flip the Clinic [email protected] | @MsWZ Thomas Workman, Ph.D. Principal Researcher, American Institutes for Research [email protected] Claire Brindis, Dr.P.H. Director, Philip R. Lee Institute for Health Policy Studies Professor, Pediatrics and health Policy Director, Bixby Center for Global Reproductive health Executive Director, Adolescent and Young Adult Health, National Resource Center [email protected] Amanda Otero Health Care Organizer, TakeAction Minnesota [email protected]