Participatory Research with Policymakers

1. Participatory Research with Policymakers Andrew Bindman, MD Catherine Hoffman, PhD 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

12. Engaging Stakeholders in Performing Policy Related Research Benefits New hypotheses Increases relevance of questions Enhances access to obtain data Opens new funding opportunities Increases usefulness of data Greater policy impact

13. Challenges in Conducting Policy Related Research with Stakeholders Relationships take time Sharing power, resources, decision-making Service versus research objectives Academic independence and desire to learn from data versus a shared mission-driven set of beliefs

14. Interesting Opportunity You are contacted by a non profit organization that you have long admired.The organization’s leadership compliments you on some of your earlier published work that supports their positions and asks if you would consider working on a new research project in collaboration with them that they believe will further support their policy agenda. They are prepared to provide you with access to their membership so that you can collect new data and they have contacts at a couple of foundations who they think will support you.

15. How Should You Evaluate This Opportunity? What are some of the key issues you should consider in deciding whether to accept the opportunity? What steps might you take to ensure that you can meet your scientific and policy related goals?

16. Community Based Participatory Research with Policymakers Benefits Direct and indirect funding potential Enhanced access to data Greater understanding of policy questions Opportunity to participate in applied work that could have direct impact on policy Challenges Being responsive on short notice Policy communication skills

17. Community Based Participatory Research with Policymakers Risks Academic independence to publish If too aligned with a political party could be labeled and isolated by the other Political environment can challenge ability of policymakers to be consistent partners

18. California Medicaid Research Institute (CaMRI) 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 Medi-Cal is a $40 billion/year program that covers more than 7 million Californians

19. 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

20. Creating a Staff to Bridge the Academic- Policy Divide University staff based on site at Medi-Cal Regular communication between CaMRI and Medi-Cal staff Developing training program to expose University’s students to state government and provide Medi-Cal with potential future employees

21. Case Study: Should Medi-Cal Invest in Medication Dispensing Machines

22. The Power of NumbersA Case Study in Evidence-Based State Health Policy-Making State budget crises and the search for cost-savings in Medicaid programs In-Home Support Services (IHSS) in the cross-hairs in 2011-12 Medi-Cal budget – resulting in loss of jobs for in-home care providers, many of whom are represented by SEIU

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

24. The Statute • Establishes the Home and Community Based Medication Dispensing Machine Pilot Project, spanning 2011 to 2013 • Purpose of Pilot: • Identify at risk Medi-Cal beneficiaries for medication non-adherence (voluntary participation) • Provide MDM at no cost to beneficiaries • Evaluate subsequent ED, hospital, and NH use, outcomes, spending and savings to Medi-Cal and Medicare

25. The Statute • Quarterly progress reports beginning 10/1/11 to DOF and Leg committees to determine potential cost savings • Continued pilot study conditional on potential to achieve $140 M in net savings in FY 11-12 • Failure to achieve savings triggers reduction in hours for IHSS beginning 10/1/12

26. Where to Begin? 1. Find a research team with experience 2. Design study quickly -- State funded 3. Select and distribute MDMs in order to begin the Evaluation and save $$ in this FY OR Step Back: Examine the underlying assumptions first

27. The Speed of It All June 2011 UC Davis subcontracted by CaMRI; Analysis begins Oct 2011 Report to Legislature on Progress $140 M Savings Projected to be Saved or IHSS cuts triggered

28. Medication Dispensing Machines

29. Cost Analysis – Key Factors • Cost of MDM • Medicare vs. Medicaid savings • Effectiveness of the MDM • Size of the Target Population • % of ED visits, Hosp and NH admissions related to Rx Non-Adherence due to Forgetfulness, Confusion, Cognitive Defects

30. Target Population Potential Population for Pilot Project Evaluation

31. Past Research: Medication Non-Adherence and Adverse Drug Events

32. Adverse Events & Medication Non-Adherence 1-5% ED Visits < 5% Hospitalizations ?? NH Admissions ~ 40% of Med Non-Adherence in Elderly R/T Forgetfulness, Confusion, Cognitive Deficits

33. Findings No Medi-Cal Savings – in fact, Medi-Cal Losses even when limited to just the Dual-Eligible population • Base model: ($43 M) • Optimistic model:($23 M) • Pessimistic model:($54 M)

34. Reasons for Lower-than-Expected Savings • Non-adherence contributes to a minority of high-cost events • Non-adherence has multiple causes, of which forgetfulness and confusion are only a subset • Number of episodes of care potentially preventable by MDMs is small fraction of total high cost episodes • Effectiveness (est. 90%) < efficacy (98%)

35. What to do Next? • Law requires pilot study proceed • October quarterly report due, but pilot project has not been started • Implementing the pilot would be costly • Given high chance of no cost savings, difficult to invest in large evaluation project

36. The Speed of It All Nov 2011 DHCS and DOF meeting to discuss progress & findings Pilot study put on hold Jan 2012 Legislative staff briefing – DOF requests legislation by 7/1/12 to modify the pilot or provide other options to achieve $140 M savings

37. Lessons

38. Organizational Conflict Academic institutions have multiple roles (research, education, clinical care) A University sponsored research enterprise focused on policy needs to manage real and apparent conflicts of interest Care needs to be taken in promoting policies that could be seen as directly impacting the University’s funding for clinical or educational activities

39. Potential Conflict UC researchers make a public recommendation to Medi-Cal program to increase payments to public hospitals UC researchers promote increased Medi-Cal GME payments

40. Managing the Conflict Transparency and disclosure Explicitly focus on findings/evidence rather than policy recommendations Seek advice from advisory board that includes independent 3rd parties Actively choose to not engage on certain topics