Participatory Research with Policymakers

1. Participatory Research with Policymakers Andrew Bindman, MD Catherine Hoffman, ScD January 31, 2013 California Medicaid Research Institute University of California

2. Community-Based Participatory Research “Research subjects become more than research objects. They give more than informed consent; they give their knowledge and experience to the formulation of research questions and methods applied…they become active partners in identifying key problems and in using the research findings to advocate policies and programs and in program development, monitoring and evaluation.” Green and Mercer, AJPH, 2001

3. Who is the Community in Participatory Research ? Those affected by issue being studied Individuals living in a geographic area Community based organizations Government agencies that provide/manage resources targeting at- risk individuals/communities

4. Table 1 Characteristics of CBPR Community members and researchers contribute equally and in all phases of research Trust, collaboration, shared decision-making and shared ownership of the research, findings and knowledge benefit all partners Researchers and community members recognize each other’s expertise in bi-directional, co-learning process Balance rigorous research and tangible community action

5. Table 1 (cont.)Characteristics of CBPR Embrace skills, strengths, resources, and assets of local individuals and organizations Community recognized as a unit of identity Emphasis on multiple determinants of health Partners commit to long-term research relationships Core elements include local capacity building, systems development, empowerment, and sustainability

6. Traditional Research vs.CBPRFormative Stage Traditional Approach Researchers plan project Form team CBPR Approach Community and academic partners form team Develop shared mission and decision-making structure

7. Traditional Research vs.CBPRStudy Selection Traditional Approach Researchers choose topic and design based on scientific theory, academic interest, data, feasibility CBPR Approach Community and academic partners also incorporate community priorities insights and assets; scientific rigor and community feasibility

8. Traditional Research vs.CBPRFunding Traditional Approach Grant written by researcher Funds go to researchers CBPR Approach Community and academic partners co-develop grant with equitable distribution of funds based on contributions

9. Traditional Research vs. CBPRImplementation/Analysis Traditional Approach Researchers solely responsible for conducting study and analyzing data CBPR Approach Community and academic partners collaborate on all efforts Traditional analysis informed by community driven questions

10. Traditional Research vs. CBPRDisseminate Findings Traditional Approach Disseminate to academic audiences CBPR Approach Community and academic partners are co-authors and co-presenters; disseminating to academics, research participants, involved communities and policy makers

11. Traditional Research vs. CBPRTranslate Research in Policy Traditional Approach Research often ends with publishing of results CBPR Approach Community and academic partners mobilize the community to use findings to advocate for policy change

12. Traditional Research vs.CBPRSustain Team Traditional Approach When grant ends, researchers often move to new project CBPR Approach Sustainability built into work from inception; partners honor initial commitment to continue partnership and work beyond funding cycles

13. When the Community is a State Agency: Medicaid

14. Benefits to Medicaid Policy Research Increases relevance of research questions New hypotheses Enhances access to obtain data Increases usefulness of data Greater policy impact Opens new funding opportunities

15. Challenges in University-Medicaid Collaboration Relationship building takes time Two distinct cultures to blend Sharing power, resources, decision-making Service vs. research objectives Scientific independence vs. a shared mission-driven set of beliefs Speed of policy-making relative to research process

16. Building Blocks for Successful CBPR with Medicaid/State Agencies • Master Agreements – multi-year best • Contracts spell out: • Scope of work • Means to set priorities for analyses/research • Data-sharing means • Publication rights, respectful of policymakers need for internal reports and confidentiality of information vs. researchers’ right to publish broadly

17. Building Blocks for Successful CBPR with Medicaid/State Agencies Researchers work at policy pace; able to forecast need for future analyses Partners mutually value the need for objective studies Reports are written for policy-maker audience Continuity in leadership in both partners

18. Building Blocks for Successful CBPR with Medicaid/State Agencies Sensitivity to party politics Perceived conflicts of interest (branches of govt., university hospitals) Universities credit researchers for products of CBPR

19. California Medicaid Research Institute (CaMRI) Medi-Cal is a $40 billion/year program covering more than 7 million Californians CaMRI is a University of California multi-campus research program Faculty perform research in collaboration with state’s Medicaid program (Medi-Cal) to evaluate policy options and outcomes

20. Navigating a University and State Government Partnership Master agreement that provides funding and specifies expectations and responsibilities for choosing projects, data sharing and publishing Cultivating relationship over time and deep into organizations - not just with top leadership

21. CaMRI University staff based on site at DHCS (Medi-Cal Department) – organized under a Master Agreement currently Communication lines with Director’s Office and Research and Analytical Studies Branch Developing training program to expose University’s students to state government and provide Medi-Cal with potential future employees

22. Case Study thesearch for cost-savings in Medicaid programsduring state budget crises Target: High Cost of In-Home Support Services for the Elderly and Disabled

23. Medication Dispensing MachinesShould Medi-Cal Invest in these for its Disabled and Elderly Members?

24. The Speed of Policy-Making Feb 2011 IHSS cuts proposed Consultant’s cost-savings of $150 M circulated Mar 2011 Legislation Drafted over ~ 2 weeks Legislation passed April 2011CaMRI consulted by DHCS’ Pharmacy Division – Design the required study

25. The Statute • Established the Home and Community Based Medication Dispensing Machine Pilot Project, spanning 2011 to 2013 • Premised on savings of $140 M/year estimated by a stakeholder group • If savings not achieved, other cuts in home support services would be made • Purpose of Pilot: • Identify at risk Medi-Cal beneficiaries for medication non-adherence (voluntary participation) • Provide machine at no cost to beneficiaries • Evaluate subsequent ED, hospital, and NH use, outcomes, spending and savings to Medi-Cal and Medicare

26. A Great Research Project ? Fully funded by the state; upwards to $1-2M for the study if needed Great opportunity for a research team with RCT experience Results would determine future policy It’s early in the untested Medi-Cal and CaMRI Partnership

27. Key Considerations • Cost of MDM • Target population:Elderly, who are covered by both Medicare and Medicaid • Effectiveness of the machine • % of ED visits, Hosp and NH admissions related to Rx mistakes due to Forgetfulness, Confusion, Cognitive Defects

28. You are CaMRI’s Director – What are your next steps?

29. Monitoring Access to Care among Medi-Cal Members Medi-Cal cuts to physicians and other provider payments enacted Providers contend that fee cuts mean fewer members will be seen and their access to care will decrease, health suffer Block cuts through legal action State sets up monitoring process to determine if fee cuts actually create access problems Results will be highly controversial

30. Monitoring Access to Care among Medi-Cal Members What role should CaMRI or any University play in monitoring this? What could be gained? What are the risks? How could these be minimized?