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.

Methods

Engaging patients and incorporating their needs and concerns within the policy-making process may improve health system policies and make those policies more patient centered. Such engagement also could be a way to generate creative solutions. However, because health-system decisions often involve making difficult trade-offs, effectively obtaining patient population input on complex care delivery issues can be challenging.

Although surveys can provide intuitive, top-of-mind input from respondents, these opinions are generally not sufficient for resolving complex problems.¹⁵ Focus groups and interviews may produce results that are more in-depth than surveys, but these methods tend to elicit settled private preferences rather than opinions about what the community should do.¹⁶ DD, on the other hand, is designed to elicit deeply informed public opinions on complex, value-laden topics to develop recommendations and policies for a larger community.¹⁷ The goal is to find collective solutions to challenging social problems. DD achieves this by giving participants an opportunity to explore a topic in-depth, question experts, and engage peers in reason-based discussions.^18,19 This method has its roots in political science and has been used over several decades to successfully inform policy making on a broad array of topics nationally and internationally—from health research ethics in the US to nuclear and energy policy in Japan.^7,16,20,21 DD has been found to promote ownership of public programs and lend legitimacy to policy decisions, political institutions, and democracy itself.¹⁸

A single day (8 hours) DD session was convened, following a Citizens Jury model of deliberation, which brings veteran patients together to learn about a topic, ask questions of experts, deliberate with peers, and generate a “citizen’s report” that contains a set of recommendations (Table 1). An overview of the different models of DD and rationale for each can be found elsewhere.^8,15

Recruitment Considerations

A purposively selected sample of civilian care-eligible veterans from a midwestern VHA health care system (1 medical center and 3 community-based outpatient clinics [CBOCs]) were invited to the DD session. The targeted number of participants was 30. Female veterans, who comprise only 7% of the local veteran population, were oversampled to account for their potentially different health care needs and to create balance between males and females in the session. Oversampling for other characteristics was not possible due to the relatively small sample size. Based on prior experience,⁷ it was assumed that 70% of willing participants would attend the session; therefore 34 veterans were invited and 24 attended. Each participant received a $200 incentive in appreciation for their substantial time commitment and to offset transportation costs.

Background Materials

A packet with educational materials (Flesch-Kincaid Grade Level of 10.5) was mailed to participants about 2 weeks before the DD session. Participants were asked to review prior to attending the session. These materials described the session (eg, purpose, organizers, importance) and provided factual information about the Choice Act (eg, eligibility, out-of-pocket costs, travel pay, prescription drug policies).

Session Overview

The session was structured to accomplish the following goals: (1) Elicit participants’ opinions about access to health care and reasons for those opinions; (2) Provide in-depth education about the Choice Act through presentations and discussions with topical experts; and (3) Elicit reasoning and recommendations on both the criteria by which participants prioritize candidates for civilian care and how participants would allocate additional funding to improve access (ie, by building VHA capacity to deliver more timely health care vs purchasing health care from civilian HCPs).