Crossing the Policy Chasm: How to Connect Health Services Research with Decision-Making

1. Crossing the Policy Chasm:How to Connect Health Services Research with Decision-Making Andrew Bindman, MD Professor Medicine, Health Policy, Epidemiology & Biostatistics University of California San Francisco

2. Traditional Research to Policy Model Problem identified with help of research Decision making about actions supported by research on options Policy implemented Monitoring and evaluation through research Research at the core of rational decision making based on consideration of all the options

3. Traditional Model Not So Traditional Real life decision making not linear More iterative process Too complex to consider all the options and insufficient data to do so Rather than finding ideal solution looking for a “good enough” one

4. Incremental Policy “Good enough solutions” lead to small scale changes Research not at the heart of assessing all the options but used in selective ways by competing groups that move in a diffuse way toward consensus

5. Two Communities Research and policy worlds culturally distinct Distinct language, timing, and values

6. Values Academic Publish or Perish A Mile Deep Peer Review Teaching Research/Grants Department Endowed Chair Tenure The Hill The Power of the Press A Mile Wide Public opinion Meet and Greet Fundraising Committees (A/B) Committee Chair Reelection

7. Researchers tend to see decision making as an event-they deliver their edicts to the impenetrable cardinals’ retreat and await the puff of smoke that signals decision while grumbling about irrationality within the conclave

8. Decision makers tend to see research as a product they can purchase from the local knowledge store, but too often it is the wrong size needs some assembly, is on back order, and comes from last year’s fashion line

9. Knowledge Brokering Conduit for two way communication between researchers and decision-makers Informing decisions is as much social as it is technical Requires re-formulated communication and social interaction to bridge

10. Attributes of Knowledge Brokers Understands cultures of research and decision making environments Able to find and assess relevant research in a variety of formats Facilitates, mediates, negotiates Trusted and credible Clear communicator

11. Who Are Knowledge Brokers in Federal Health Policy Congressional think tanks CRS, CBO, GAO Congressional Commissions Medpac, MACPAC Institute of Medicine Foundations Universities and other research organizations

12. Others Who Seek to Fill the Knowledge Void Washington think tanks Interest groups

13. Voluntary Health Associations American Heart Association American Cancer Society American Diabetes Association Paralyzed Veterans of America National Alliance Mentally Ill March of Dimes

14. Trade Associations America’s Health Insurance Plans American Hospital Association Association of American Medical Colleges Federation of American Health Systems Pharmaceutical Research and Manufacturers Association ADVAMED

15. Professional Societies American Medical Association National Medical Association American Nurses Association American Pharmacists Association American Trial Lawyers Association

16. Think Tanks Center for American Progress Heritage Cato Urban Institute New America Foundation Brookings Institute

17. UNIONS SEIU AFL-CIO UAW ILGWU

18. Other Major Stakeholders AARP Families USA National Governors Association National Conference of State Legislators

19. Knowledge Broker Communication Shopping ideas to sympathetic staff in Congress, White House and Agencies Cultivating specific relationships Talking to other knowledge brokers Communicating back to leadership of organization

20. What are They Talking About Updates about what new things they have learned since last conversation Information about membership concerns Updates about where things are in legislation cycle Updates on how other decision makers view action items

21. Interest Groups Will Go Beyond Information and Promote Action Encourage introduction of bill Write language of bill Strategize politics of legislation with Congressional leadership Bring members to hearings Liaison with executive branch

22. Why Do Policy Makers/Staff Want to Meet with Knowledge Brokers To hear about the latest research findings To learn about stakeholder positions and priorities To learn what knowledge brokers have learned from other decision makers To test ideas for solutions To activate political pressure

23. Limitations of Knowledge Broker Model for Researchers Time demanding to be an available resource for decision-makers Value of objective research evidence can be diminished in a sea of competing messages from biased knowledge brokers Promotes style over substance

24. Where Does Research End and Advocacy Begin • Some researchers never cross the policy chasm • Others engage policymakers without engaging the communities affected by the policies • Increasingly researchers are working in a collaborative and interactive way throughout the research process with stakeholders to influence policy

25. 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

26. 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

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

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

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

31. Traditional Approach Researchers solely responsible for conducting study and analyzing data CBPR Approach Policymakers and academic partners collaborate on all efforts; traditional analysis informed by policy driven questions Traditional Research vs CBPRImplementation/Analysis

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

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

34. 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 Traditional Research vs CBPRSustain Team

35. Community Based Participatory Research (CBPR) • 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

36. CBPR with Policymakers • Challenges • 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

37. Community Based Participatory Research with Policymakers • Additional Challenges • If too aligned with one political party could be labeled and isolated by the other • Political environment can challenge ability of policymakers to be consistent partners • Policy versus academic response times

38. Navigating a University and State Government Partnership • California Medicaid Research Institute (CaMRI) • University of California multi-campus research program • Master agreement between UC and state that specifies expectations and responsibilities for choosing projects, data sharing and publishing • Cultivating relationship over time and deep into organizations - not just with leadership • Pursue direct as well as independent funding

39. CaMRI Medicaid Waiver Evaluation Process with State • Formulate questions together • Agree on methodological approach • Approach funders together • Dissemination plan includes scientific community as well as Medicaid stakeholders (counties, patients and providers)

40. Closing Thoughts • Research can inform public policy and be a powerful tool for social change • To enhance your effectiveness you need to be scientifically rigorous and sophisticated in how you disseminate your results • Connecting with and forming linkages among knowledge brokers is critical for influencing the policy process • Community based participatory research may be a highly effective way to align the research process with the policy decision-making process