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 Problem identified with help of research Decision making about actions supported by research on options Decision making about actions supported by research on options Policy implemented Policy implemented Monitoring and evaluation through research Monitoring and evaluation through research Research at the core of rational decision making based on consideration of all the options 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 Real life decision making not linear More iterative process More iterative process Too complex to consider all the options and insufficient data to do so Too complex to consider all the options and insufficient data to do so Rather than finding ideal solution looking for a “good enough” one Rather than finding ideal solution looking for a “good enough” one

4. Incremental Policy “Good enough solutions” lead to small scale changes “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 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 Research and policy worlds culturally distinct Distinct language, timing, and values Distinct language, timing, and values

6. Values Academic Academic –Publish or Perish –A Mile Deep –Peer Review –Teaching –Research/Grants –Department –Endowed Chair –Tenure The Hill 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 Conduit for two way communication between researchers and decision- makers Informing decisions is as much social as it is technical Informing decisions is as much social as it is technical Requires re-formulated communication and social interaction to bridge Requires re-formulated communication and social interaction to bridge

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

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

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

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

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

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

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

17. UNIONS SEIU SEIU AFL-CIO AFL-CIO UAW UAW ILGWU ILGWU

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

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

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

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

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

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

24. Where Does Research End and Advocacy Begin Some researchers never cross the policy chasm Some researchers never cross the policy chasm Others engage policymakers without engaging the communities affected by the policies 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 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.” “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 Green and Mercer, AJPH, 2001

26. Who is the Community in Participatory Research Those affected by issue being studied 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 Research vs CBPR Formative Stage Traditional Approach Traditional Approach –Researchers plan project –Form team CBPR Approach CBPR Approach –Policymakers and academic partners form team –Develop shared mission and decision-making structure

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

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

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

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

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

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

35. Community Based Participatory Research (CBPR) Benefits 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 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 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) 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 Formulate questions together Agree on methodological approach Agree on methodological approach Approach funders together Approach funders together Dissemination plan includes scientific community as well as Medicaid stakeholders (counties, patients and providers) 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 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 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 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 Community based participatory research may be a highly effective way to align the research process with the policy decision- making process