Original Research

Using Democratic Deliberation to Engage Veterans in Complex Policy Making for the Veterans Health Administration

Fed Pract. 2020 January;37(01):24-32

References

1. VA Office of the Inspector General. Veterans Health Administration. Interim report: review of patient wait times, scheduling practices, and alleged patient deaths at the Phoenix Health Care System. https://www.va.gov/oig/pubs/VAOIG-14-02603-178.pdf. Published May 28, 2014. Accessed December 9, 2019.

2. Veterans Access, Choice, and Accountability Act of 2014. 42 USC §1395 (2014).

3. Penn M, Bhatnagar S, Kuy S, et al. Comparison of wait times for new patients between the private sector and United States Department of Veterans Affairs medical centers. JAMA Netw Open. 2019;2(1):e187096.

4. Thorpe JM, Thorpe CT, Schleiden L, et al. Association between dual use of Department of Veterans Affairs and Medicare Part D drug benefits and potentially unsafe prescribing. JAMA Intern Med. 2019; July 22. [Epub ahead of print.]

5. Moyo P, Zhao X, Thorpe CT, et al. Dual receipt of prescription opioids from the Department of Veterans Affairs and Medicare Part D and prescription opioid overdose death among veterans: a nested case-control study. Ann Intern Med. 2019;170(7):433-442.

6. Meyer LJ, Clancy CM. Care fragmentation and prescription opioids. Ann Intern Med. 2019;170(7):497-498.

7. Damschroder LJ, Pritts JL, Neblo MA, Kalarickal RJ, Creswell JW, Hayward RA. Patients, privacy and trust: patients’ willingness to allow researchers to access their medical records. Soc Sci Med. 2007;64(1):223-235.

8. Street J, Duszynski K, Krawczyk S, Braunack-Mayer A. The use of citizens’ juries in health policy decision-making: a systematic review. Soc Sci Med. 2014;109:1-9.

9. Paul C, Nicholls R, Priest P, McGee R. Making policy decisions about population screening for breast cancer: the role of citizens’ deliberation. Health Policy. 2008;85(3):314-320.

10. Martin D, Abelson J, Singer P. Participation in health care priority-setting through the eyes of the participants. J Health Serv Res Pol. 2002;7(4):222-229.

11. Mort M, Finch T. Principles for telemedicine and telecare: the perspective of a citizens’ panel. J Telemed Telecare. 2005;11(suppl 1):66-68.

12. Kass N, Faden R, Fabi RE, et al. Alternative consent models for comparative effectiveness studies: views of patients from two institutions. AJOB Empir Bioeth. 2016;7(2):92-105.

13. Carman KL, Mallery C, Maurer M, et al. Effectiveness of public deliberation methods for gathering input on issues in healthcare: results from a randomized trial. Soc Sci Med. 2015;133:11-20.

14. Carman KL, Maurer M, Mangrum R, et al. Understanding an informed public’s views on the role of evidence in making health care decisions. Health Aff (Millwood). 2016;35(4):566-574.

15. Kim SYH, Wall IF, Stanczyk A, De Vries R. Assessing the public’s views in research ethics controversies: deliberative democracy and bioethics as natural allies, J Empir Res Hum Res Ethics. 2009;4(4):3-16.

16. Gastil J, Levine P, eds. The Deliberative Democracy Handbook: Strategies for Effective Civic Engagement in the Twenty-First Century. San Francisco, CA: Jossey-Bass; 2005.

17. Dryzek JS, Bächtiger A, Chambers S, et al. The crisis of democracy and the science of deliberation. Science. 2019;363(6432):1144-1146.

18. Blacksher E, Diebel A, Forest PG, Goold SD, Abelson J. What is public deliberation? Hastings Cent Rep. 2012;4(2):14-17.

19. Wang G, Gold M, Siegel J, et al. Deliberation: obtaining informed input from a diverse public. J Health Care Poor Underserved. 2015;26(1):223-242.

20. Simon RL, ed. The Blackwell Guide to Social and Political Philosophy. Malden, MA: Wiley-Blackwell; 2002.

21. Stanford University, Center for Deliberative Democracy. Deliberative polling on energy and environmental policy options in Japan. https://cdd.stanford.edu/2012/deliberative-polling-on-energy-and-environmental-policy-options-in-japan. Published August 12, 2012. Accessed December 9, 2019.

22. Damschroder LJ, Pritts JL, Neblo MA, Kalarickal RJ, Creswell JW, Hayward RA. Patients, privacy and trust: patients’ willingness to allow researchers to access their medical records. Soc Sci Med. 2007;64(1):223-235.

23. Carman KL, Maurer M, Mallery C, et al. Community forum deliberative methods demonstration: evaluating effectiveness and eliciting public views on use of evidence. Final report. https://effectivehealthcare.ahrq.gov/sites/default/files/pdf/deliberative-methods_research-2013-1.pdf. Published November 2014. Accessed December 9, 2019.

24. Sunstein CR, Hastie R. Wiser: Getting Beyond Groupthink to Make Groups Smarter. Boston, MA: Harvard Business Review Press; 2014.

25. Damschroder LJ, Kim SY. Assessing the quality of democratic deliberation: a case study of public deliberation on the ethics of surrogate consent for research. Soc Sci Med. 2010;70(12):1896-1903.

26. Miles MB, Huberman AM. Qualitative Data Analysis: An Expanded Sourcebook. 2nd ed. Thousand Oaks: SAGE Publications, Inc; 1994.

27. US Department of Veterans Affairs. Veteran community care – general information. https://www.va.gov/COMMUNITYCARE/docs/pubfiles/factsheets/VHA-FS_MISSION-Act.pdf. Published September 9 2019. Accessed December 9, 2019.

Ensuring Robust Deliberations

If participants do not adequately grasp the complexities of the topic, a deliberation can fail. To facilitate nuanced reasoning, real-world concrete examples were developed as the starting point of each deliberation based on interviews with actual patients (deliberation 1) and actual policy proposals relevant to the funding allocation decisions within the Choice Act (deliberation 2).

A deliberation also can fail with self-silencing, where participants withhold opinions that differ from those articulated first or by more vocal members of the group.²⁴ To combat self-silencing, highly experienced facilitators were used to ensure sharing from all participants and to support an open-minded, courteous, and reason-based environment for discourse. It was specified that the best solutions are achieved through reason-based and cordial disagreement and that success can be undermined when participants simply agree because it is easier or more comfortable.

A third way a deliberation can fail is if individuals do not adopt a group or system-level perspective. To counter this, facilitators reinforced at multiple points the importance of taking a broader social perspective rather than sharing only one’s personal preferences.

Finally, it is important to assess the quality of the deliberative process itself, to ensure that results are trustworthy.²⁵ To assess the quality of the deliberative process, participants knowledge about key issues pre- and postdeliberation were assessed. Participants also were asked to rate the quality of the facilitators and how well they felt their voice was heard and respected, and facilitators made qualitative assessments about the extent to which participants were engaged in reason-based and collaborative discussion.

Data

Quantitative data were collected via pre- and postsession surveys. The surveys contained items related to knowledge about the Choice Act, expectations for the DD session, beliefs and opinions about the provision of health care for veterans, recommended funding allocations between build vs buy policy options, and general demographics. Qualitative data were collected through detailed notes taken by the 3 facilitators. Each table’s deliberations were audio recorded so that gaps in the notes could be filled.

The 3 facilitators, who were all experienced qualitative researchers, typed their written notes into a template immediately after the session. Two of the 3 facilitators led the analysis of the session notes. Findings within and across the 3 deliberation tables were developed using content and matrix analysis methods.²⁶ Descriptive statistics were generated from survey responses and compared survey items pre- and postsession using paired t tests or χ² tests for categorical responses.

Results

Thirty-three percent of individuals invited (n = 127) agreed to participate. Those who declined cited conflicts related to distance, transportation, work/school, medical appointments, family commitments, or were not interested. In all, 24 (69%) of the 35 veterans who accepted the invitation attended the deliberation session. Of the 11 who accepted but did not attend, 5 cancelled ahead of time because of conflicts (Figure). Most participants were male (70%), 48% were aged 61 to 75 years, 65% were white, 43% had some college education, 43% reported an annual income of between $25,000 and $40,000, and only 35% reported very good health (eAppendix D).