Assessing the Quality of Democratic Deliberation: A Case Study of Public Deliberation on the Ethics of Surrogate Consent for Research
In: Social Science and Medicine, 2010
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In: Social Science and Medicine, 2010
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"Deliberative democracy" is an increasingly popular method for soliciting public input on health care policies. There are a number of ways of organizing deliberative democracy (DD) sessions, but they generally involve gathering a group of citizens, supplying them with information relevant to the policy in question, giving them time to interact with each other and with experts in the policy area, and collecting their informed and considered opinions. As the method has become more widely used, some have questioned the quality of the public input it generates. Although theorists of DD agree that "good" input – i.e., input that is the product of careful and thorough reflection – is an essential aspect of useful and effective deliberation, few have actually measured the quality of deliberative sessions. As part of a DD project organized to help guide policies on the morally complex question of allowing surrogate permission to enroll persons with dementia in medical research, we developed and tested measures of "quality of deliberation." After a brief discussion of the substantive results of our research – survey data from participants in the DD sessions and control groups showed a significant change in participants' attitudes toward surrogate consent – we examine the process by which this change occurred, describing and assessing the characteristics of our DD sessions. We use both quantitative and qualitative data from our DD sessions, conducted in southeastern Michigan, United States, to examine four dimensions of the quality of deliberation: 1) equal participation by all members of the session, 2) respect for the opinions of others, 3) a willingness to adopt a societal perspective on the issue in question (rather than a focus on what is best for participants as individuals), and 4) reasoned justification of one's positions. We demonstrate that DD can be reliably used to elicit opinions of the public and show how analysis of the quality of deliberations can offer insight into the ways opinions about ethical dilemmas ...
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A democratic deliberation panel of veterans providing insight into veteran perspectives on resource allocation and the Veterans Choice Act showed the importance and feasibility of engaging veterans in the policy-making process.
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In: https://doi.org/10.7916/D8445XHF
Background: There is a longstanding concern about the accuracy of surrogate consent in representing the health care and research preferences of those who lose their ability to decide for themselves. We sought informed, deliberative views of the older general public (≥50 years old) regarding their willingness to participate in dementia research and to grant leeway to future surrogates to choose an option contrary to their stated wishes. Methodology/Principal Findings: 503 persons aged 50+ recruited by random digit dialing were randomly assigned to one of three groups: deliberation, education, or control. The deliberation group attended an all-day education/peer deliberation session; the education group received written information only. Participants were surveyed at baseline, after the deliberation session (or equivalent time), and one month after the session, regarding their willingness to participate in dementia research and to give leeway to surrogates, regarding studies of varying risk-benefit profiles (a lumbar puncture study, a drug randomized controlled trial, a vaccine randomized controlled trial, and an early phase gene transfer trial). At baseline, 48% (gene transfer scenario) to 92% (drug RCT) were willing to participate in future dementia research. A majority of respondents (57–71% depending on scenario) were willing to give leeway to future surrogate decision-makers. Democratic deliberation increased willingness to participate in all scenarios, to grant leeway in 3 of 4 scenarios (lumbar puncture, vaccine, and gene transfer), and to enroll loved ones in research in all scenarios. On average, respondents were more willing to volunteer themselves for research than to enroll their loved ones. Conclusions/Significance: Most people were willing to grant leeway to their surrogates, and this willingness was either sustained or increased after democratic deliberation, suggesting that the attitude toward leeway is a reliable opinion. Eliciting a person's current preferences about future research participation should also involve eliciting his or her leeway preferences.
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BACKGROUND: Qualitative approaches, alone or in mixed methods, are prominent within implementation science. However, traditional qualitative approaches are resource intensive, which has led to the development of rapid qualitative approaches. Published rapid approaches are often inductive in nature and rely on transcripts of interviews. We describe a deductive rapid analysis approach using the Consolidated Framework for Implementation Research (CFIR) that uses notes and audio recordings. This paper compares our rapid versus traditional deductive CFIR approach. METHODS: Semi-structured interviews were conducted for two cohorts of the Veterans Health Administration (VHA) Diffusion of Excellence (DoE). The CFIR guided data collection and analysis. In cohort A, we used our traditional CFIR-based deductive analysis approach (directed content analysis), where two analysts completed independent in-depth manual coding of interview transcripts using qualitative software. In cohort B, we used our new rapid CFIR-based deductive analysis approach (directed content analysis), where the primary analyst wrote detailed notes during interviews and immediately "coded" notes into a MS Excel CFIR construct by facility matrix; a secondary analyst then listened to audio recordings and edited the matrix. We tracked time for our traditional and rapid deductive CFIR approaches using a spreadsheet and captured transcription costs from invoices. We retrospectively compared our approaches in terms of effectiveness and rigor. RESULTS: Cohorts A and B were similar in terms of the amount of data collected. However, our rapid deductive CFIR approach required 409.5 analyst hours compared to 683 h during the traditional deductive CFIR approach. The rapid deductive approach eliminated $7250 in transcription costs. The facility-level analysis phase provided the greatest savings: 14 h/facility for the traditional analysis versus 3.92 h/facility for the rapid analysis. Data interpretation required the same number of hours for both approaches. CONCLUSION: Our rapid deductive CFIR approach was less time intensive and eliminated transcription costs, yet effective in meeting evaluation objectives and establishing rigor. Researchers should consider the following when employing our approach: (1) team expertise in the CFIR and qualitative methods, (2) level of detail needed to meet project aims, (3) mode of data to analyze, and (4) advantages and disadvantages of using the CFIR.
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Background: One goal of health systems seeking to evolve into learning health systems is to accelerate the implementation and sustainment of evidence-based practices (EBPs). As part of this evolution, the Veterans Health Administration (VHA) developed the Innovation Ecosystem, which includes the Diffusion of Excellence (DoE), a program that identifies and diffuses Gold Status Practices (GSPs) across facilities. The DoE hosts an annual "Shark Tank" competition in which leaders bid on the opportunity to implement a GSP with 6 months of implementation support. Over 750 diverse practices were submitted in cohorts 2 and 3 of Shark Tank; 23 were designated GSPs and were implemented in 31 VA networks or facilities. As part of a national evaluation of the DoE, we identified factors contributing to GSP implementation and sustainment. Methods: Our sequential mixed methods evaluation of cohorts 2 and 3 of Shark Tank included semi-structured interviews with at least one representative from 30/31 implementing teams (N = 78/105 people invited) and survey responses from 29/31 teams (N = 39/47 invited). Interviews focused on factors influencing implementation and future sustainment. Surveys focused on sustainment 1.5-2 years after implementation. The Consolidated Framework for Implementation Research (CFIR) informed data collection and directed content analysis. Ordinal scales were developed inductively to rank implementation and sustainment outcomes. Results: Over 50% of teams (17/30) successfully implemented their GSP within the 6-month implementation period. Despite extensive implementation support, significant barriers related to centralized decision-making, staffing, and resources led to partial (n = 6) or no (n = 7) implementation for the remaining teams. While 12/17 initially successful implementation teams reported sustained use of their GSP, over half of the initially unsuccessful teams (n = 7/13) also reported sustained GSP use 1.5 years after the initial implementation period. When asked at 6 months, 18/27 teams with complete data accurately anticipated their future sustainability based on reported sustainment an average of 1.5 years later. Conclusions: Most teams implemented within 6 months and/or sustained their GSP 1.5 years later. High levels of implementation and sustainment across diverse practices and teams suggest that VHA's DoE is a successful large-scale model of diffusion. Team predictions about sustainability after the first 6 months of implementation provide a promising early assessment and point of intervention to increase sustainability.
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