Assessing Meaningful Community Engagement In Health Health Care

Assessing Meaningful Community Engagement In Health & Health Care A project of the NAM Leadership Consortium and the Robert Wood Johnson Foundation December 12, 2019

Background and Goals

Background • Achieving a culture of health requires meaningful participation of community members as part of the policymaking and program development processes • Our aim is to assess and advance the responsiveness of public and private programs to community needs and enhance meaningful engagement with diverse audiences • The deliverable will be a NAM Special Publication that identifies candidate measure(s) of meaningful community engagement and establishes a framework for advancement

Steering Committee Members • • • • Sergio Aguilar-Gaxiola, MD, Ph. D, University of California, Davis (Co-Chair) Ann Hwang, MD, Community Catalyst (Co-Chair) Syed M. Ahmed, MD, Dr. PH, Medical College of Wisconsin Karen De. Salvo, MD, University of Texas, Dell Medical School Milton "Mickey" Eder, Ph. D, University of Minnesota Tekisha Dwan Everette, Ph. D, MPA, Health Equity Solutions Elmer Freeman, MSW, Center for Community Health Education, Research and Service David Gibbs, Community Initiatives Ella Greene-Moton, Center for Public Health and Community Genomics Sinsi Hernández-Cancio, JD, Families USA Dmitry Khodyakov, Ph. D, RAND Corporation/Pardee Graduate School J. Lloyd Michener, MD, Duke University Bobby Milstein, Ph. D, MPH, Re. Think Health Nina Wallerstein, Dr. PH, University of New Mexico Jack Westfall, MD, Whole Person Care at Santa Clara Valley Medical Center

Goals of Project • Identify an indicator or set of indicators that can be used to measure meaningful community engagement in a wide range of settings that ─ characterize, track, motivate, guide progress • on the engagement of ─ individual, family, community groups • in shaping how health care programs and policies are ─ developed, implemented, overseen • with special emphasis on those most in need

Progress To Date

Defined Community • Community “is a group of individuals organized into a unit or manifesting some unifying trait or common interest. Community need not be defined solely by geography. It can refer to a group that self-identifies by age, ethnicity, gender, sexual orientation… faith, life experience, disability, illness, or health condition; it can refer to a common interest or cause, a sense of identification or shared emotional connection, shared values or norms, mutual influence, common interest, or commitment to meeting a shared need. ” Principles of Community Engagement. Atlanta, Ga: Centers for Disease Control and Prevention, Public Health Practice Program Office; 1997.

Defined (Meaningful) Community Engagement • (Meaningful) Community engagement is “the process of working collaboratively with and through groups of people affiliated by geographic proximity… or similar situations to address issues affecting the well-being of those people. It is a powerful vehicle for bringing about environmental and behavioral changes that will improve the health of the community and its members. It often involves partnerships and coalitions that help mobilize resources and influence systems, change relationships among partners, and serve as catalysts for changing policies, programs, and practices. ” Principles of Community Engagement. Atlanta, Ga: Centers for Disease Control and Prevention, Public Health Practice Program Office; 1997.

Determined Audiences and Applications • Identify audiences and users of measures ─ Federal, state and local agencies, and Tribal communities ─ Advocacy & community-based groups ─ Funders, philanthropy, & financiers ─ Academic institutions ─ Health systems & hospitals ─ Payers, plans, & industry • Understand applications and use of measures ─ Evaluate influence of current engagement efforts, activities, and effectiveness ─ Assess financing needs and decisions ─ Evaluate infrastructure and systems change ─ Assess changes in individual and community health and mental health, equity, and well-being

Identified Components of a Conceptual Model • Develop an easy to understand conceptual model that outlines key components needed to engage communities and measuring the impact of engagement Community Context Principles and Values Engagement Approaches and Strategies Drivers of Change Key Outcomes • Relational Outcomes • Policy and Program Change • Transformational Outcomes

Conducted Literature Search and Synthesizing Results Conducted Literature Search to Identify Relevant Articles • Searched Embase, Medline, Psyc. INFO, Pubmed, Scopus • Used search terms for “engagement, ” “health, ” “outcomes, ” “measurement” • Identified ~500 high relevant articles • Conducting inclusion/ exclusion review at abstract level (~80% complete; ~20% of articles are relevant) • Identified relevant reports from grey literature Identifying Relevant Measures Selecting Parsimonious List of Measures • Identify measures such as • Abstract and synthesize critical information on measures • Discuss measures and assess components • Qualitative vs quantitative measure • Unit of analysis • Documented vs. data collection • Response burden • Validity, reliability, feasibility • Trust development • Community participation • Capacity • Mutual learning • Power dynamics • Sustainability • Collaboration • Health outcomes/indicators

Next Steps

Timeline Begin to Engage Community Members (Jan 2020) Convene 2 nd In-person Meeting (April 2020) Develop Complete List of Measures (Feb. 2020) Finalize Case Studies; Map to Conceptual Model (June 2020) Identify Parsimonious List of Measures (June 2020) Finalize Conceptual Model (May 2020) Draft Special Publication (June 2020) Finalize Special Publication (Nov. 2020) Finalize Community. Relevant Materials (Nov. 2020) Disseminate Materials (Dec. 2020)

Motivating Questions • What are the most important use cases that should be highlighted in the NAM Special Publication? • What additional domains should the measures/measure concepts cover? • What criteria should be considered for selecting candidate measures/measure concepts? • What considerations should be made to ensure measures are relevant to individuals, families, and communities who are at highest risk? • What considerations should be made to identify a parsimonious number of measures that can also be relevant to multiple users?