Engaging the Public on the Use of Evidence: The Role of Public Deliberation

1. Engaging the Public on the Use of Evidence: The Role of Public Deliberation Kristin L. Carman, PhD Maureen Maurer, MPH

2. Session objectives • Explain public deliberation and application in health care • Identify best practices for successful public deliberation • Describe AHRQ’s Community Forum deliberative methods experiment

3. Reason for this work • 3-year, ARRA-funded initiative of Agency for Healthcare Research and Quality • Seeks to: • Expand the evidence base about public deliberation • Obtain public input on a topic of value to AHRQ: the use of evidence in health care decisionmaking

4. Overview of Public Deliberation

5. What is public deliberation? • Public consultation approach • Involves lay members of the public • Includes an educational component and a discussion-based (or deliberative) component • Suited for ethical or values-based social issues • Concerned with the “greater good” or societal interests

6. Core elements of public deliberation Outcome: Impact on individual participants Outcome: Impact on civic decisionmaking

7. How deliberation differs from other public consultation methods • Educational • Participant-based dialogue • Reason-based • Societal perspective & mutual responsibility • Challenging

8. Examples of deliberative methods • Citizens’ Jury • Citizens’ Panel / Council • Deliberative Focus Group • Deliberative Poll ® • Issues Forum • Study Circles • Town Hall • Hybrid approaches

9. How deliberative methods vary • Group size, participant sample • Length, duration • Mode (online, in-person) • Recruitment method • Use of educational materials and experts • Facilitation • Consensus as goal

10. What are the outcomes of public deliberation? • Informed public input to the sponsor • Summary of important themes in participants’ views • Can be used to inform policy, programmatic, or other decisions

11. What are the outcomes of public deliberation? (cont.) • Impact on participants • Increased knowledge of the deliberative topic • Change in attitudes on deliberative topic • Increased willingness to participate in civic activities • Adoption of societal concerns / shift from personal preferences

12. Application in Health Care

13. Real-world applications of deliberative methods • Examples • Developing a fair cost-sharing structure(Ginsburg et al., 2012) • Priority-setting social and health interventions (Pesce et al., 2011)

14. Developing a fair cost-sharing structure • Issue: Cost-sharing (deductibles, co-payments) can have varying financial impact on patients depending on their health care needs. What is the fairest way to structure cost-sharing when there is diversity of needs? • Researchers: The California Health Benefit Exchange and the Center for Healthcare Decisions. • Goals: Learn how future Exchange users prioritize the health care needs that should have greatest consideration for affordable cost-sharing. • Evaluation: Assess response to participating in the deliberative process and its importance as input to the design of new health insurance programs.

15. Prioritizing interventions • Issue: How would you determine which social or health services to provide to improve health? • Researchers: National Institutes of Health, Howard University, and D.C. Department of Health • Goals: Learn how participants prioritize social or health services to improve health and understand their reasoning • Evaluation: Assess deliberative process and whether deliberation affected participants’ knowledge on the determinants of health

16. Best Practices For Successful Public Deliberation

17. What conditions enable good public deliberation? • Clear deliberative goals • Participant trust in the process and outcomes • Accurate, unbiased information (education, experts) • Reason-giving • Diversity

18. Design considerations • Setting goals • Identifying and recruiting participants • Selecting deliberative process or method • Educating session participants • Facilitating sessions • Synthesizing output

19. Areas for further study • Understanding what works best • Understanding impact on decisionmakers and policy • Which deliberative methods work best • How to address inequalities within context of deliberation • Recruitment strategies and incentives • Measuring equal participation • Language considerations

20. Check In • Questions so far... • Discussion • What issues do you see as appropriate for deliberation?

21. AHRQ’s Community Forum Experiment

22. Deliberative methods experiment: RCT 76 deliberative groups in 4 U.S. cities in 4 months

23. Deliberative methods experiment: RCT

24. Overarching deliberative question • Deliberate on the use of evidence in healthcare decision-making: • Should individual patients and/or their doctors be able to make any health decisions no matter what the evidence of medical effectiveness shows, or should society ever specify some boundaries for these decisions? • Will explore 3 “variations” on the theme • Decisionmaking to encourage better health care • Decisionmaking when there are cost implications • Decisionmaking when there are complex societal tradeoffs

25. Sub-questions by variation

26. Deliberative questions across methods

27. Overview of Community Forum evaluation

28. Overall process for evaluation

29. Quantitative analysis: Mapping concepts to surveys

30. Qualitative analysis: Aims • Summarize values and ethical principles cited by participants • Assess whether values and ethical principles differ by method

31. Qualitative analysis: Approach

32. How the public views the application of evidence • What and how does the public think about applying medical evidence? • What matters most to the public? • How can public input be used to inform CER?

33. Integrating quantitative and qualitative analyses

34. Next steps and resources • Next steps • Implement experiment: now – fall 2012 • Analysis: summer 2012 – summer 2013 • Report of findings: fall 2013 • Information to look for on the EHC Program website • Webinars • Using Deliberative Methods to Engage the Public: How to Design and Implement an Effective Deliberative Session (April 2012) • Using Deliberative Methods to Engage Patients, Consumers, and the Public (December 2011) • Literature Review (coming soon)http://www.effectivehealthcare.ahrq.gov/index.cfm/tools-and-resources/how-to-get-involved-in-the-effective-health-care-program/

35. Key contacts • American Institutes for Research • Kristin L. Carman, Project Director • kcarman@air.org403-5090 • Maureen Maurer • mmaurer@air.org • AHRQ • Joanna Siegel, Project Officer • Joanna.Siegel@ahrq.hhs.gov, 301-427-1969 AHRQ’s Effective Health Care Program site: http://www.effectivehealthcare.ahrq.gov/index.cfm/tools-and-resources/

36. Questions?