The Alameda County Care Alliance Evaluation Research to Assess ACCA Outcomes: Challenges, Dead Ends, and Ways Forward November 29, 2017 Jill G. Joseph, MD, PhD Betty Irene Moore SON, UC Davis Cynthia Carter Perrilliat, Executive Director, ACCA

Alameda County Care Alliance A faith-based community advanced illness care navigation program that helps persons needing advanced illness care and their caregivers In 2014, five denominationally diverse African-American Pastors in Alameda County recognized increasing problems with serious health concerns among their congregants and poor integration of spiritual concerns into health care. In response, they created the Alameda County Care Alliance Advanced Illness Care Program™ (ACCA-AICP) a faith-based, person-centered, lay care navigation intervention serving predominantly African American adults with advanced illness and their caregivers in alignment with their spiritual and religious values. (FYI) Advanced Illness occurs when one or more conditions become serious enough that: general health and functioning decline, and “Health gets worse over time” “unable to function independently” treatments begin to lose their impact – “treatment is less helpful

Multiple Programmatic Accomplishments Trust building Program planning and partnership building Staff recruitment and training Funding support Broad inclusion beyond faith community Expansion of participating churches Fidelity to faith-based roots

The ACCA Path to Sustainability Sustainable, replicable program Build trusting relationships Confirm need & commitment Attract funders Aligned policy and funding Standardized training Standardized intervention Inclusion New partners and funders Evaluation Activities Program Planning 2013 - 2014 Local Successful Program 2015 - 2019 National Program Model 2020 ---

Outcome Evaluation History: Challenges Randomized trial approach advocated Quasi-experimental pre/post longitudinal design Now what? Not acceptable Not feasible Acceptable +/- Remarkable progress Limited progress

Now What? Clearly Define Program Program community-based and developed, NOT community-engaged Program with multiple domains, NOT just care navigation intervention

Evaluation activities Community expectations Church culture Not enrolled Personal contact Enrolled Partial visits Enrolled receive 10 visits Evaluation activities

Two “Dead End” Alternatives DEMAND PROVIDE Rigorous design Large N representative samples Longitudinal data Faith and community-based novel programs Enthusiasm Limited support Intriguing model for policymakers

Evaluation: A Collective Way Forward? 1. Recognize merits of methodologic rigor 2. Recognize limits of methodologic rigor WRT bias, generalizability and relevance (Ioannidis JP (2005) Why most research findings are false. PLoS Medicine 2:696-701;) 3. “Triangulate” outcome evaluation across multiple domains Track church culture, community expectations Track change in clinical outcomes with clinical partners Consider consortium to provide real time “replication” 4. Think historically and incrementally. Act collectively.