A Framework for Assessing the Quality of Democratic Deliberation: Enhancing Deliberation as a Tool for Bioethics

Vries, Raymond De; Stanczyk, Aimee; Ryan, Kerry A.; Kim, Scott Y. H.

doi:10.1525/jer.2011.6.3.3

Cited by 42 publications

(55 citation statements)

References 17 publications

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“…Third, there may have been undetected group dynamics or subtle influences from the experts during the deliberation session that affected the deliberations. However, careful qualitative analyses of the sessions show that the quality of deliberation was quite high and that participants were very satisfied with the sessions, learned and used new information, were respectful and collaborative, and were able to “reason together” effectively [18]. Finally, because the attitudes elicited were based upon information unique to dementia research, findings may not be generalizable to other research, e.g., research involving comatose subjects or incapacitated persons with mental illness.…”

Section: Discussionmentioning

confidence: 99%

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How Important Is ‘Accuracy’ of Surrogate Decision-Making for Research Participation?

Kim

Ryan

et al. 2013

PLoS ONE

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BackgroundThere 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 Findings503 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/SignificanceMost 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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Section: Discussionmentioning

confidence: 99%

“…A detailed account of the theoretical basis and methodological procedures for this study is available at http://tinyurl.com/DD-methods-PDF [17], [18].…”

Section: Methodsmentioning

confidence: 99%

How Important Is ‘Accuracy’ of Surrogate Decision-Making for Research Participation?

Kim

Ryan

et al. 2013

PLoS ONE

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“…We evaluate CHAT deliberations using a framework that examines the formal structure of deliberation (how it is organized), the process of deliberation (how it transpires) and the outcomes produced (Table ) . While the goal of deliberation could be construed as “better” decisions, or outcomes, much of the normative value of deliberation comes from its promise of offering a fair process of discussion and decision making, independent of the decisions actually reached.…”

Section: Introductionmentioning

confidence: 99%

Evaluating community deliberations about health research priorities

Goold¹,

Danis

Abelson

et al. 2019

Health Expectations

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Context Engaging underrepresented communities in health research priority setting could make the scientific agenda more equitable and more responsive to their needs. Objective Evaluate democratic deliberations engaging minority and underserved communities in setting health research priorities. Methods Participants from underrepresented communities throughout Michigan (47 groups, n = 519) engaged in structured deliberations about health research priorities in professionally facilitated groups. We evaluated some aspects of the structure, process, and outcomes of deliberations, including representation, equality of participation, participants’ views of deliberations, and the impact of group deliberations on individual participants’ knowledge, attitudes, and points of view. Follow‐up interviews elicited richer descriptions of these and also explored later effects on deliberators. Results Deliberators (age 18‐88 years) overrepresented minority groups. Participation in discussions was well distributed. Deliberators improved their knowledge about disparities, but not about health research. Participants, on average, supported using their group's decision to inform decision makers and would trust a process like this to inform funding decisions. Views of deliberations were the strongest predictor of these outcomes. Follow‐up interviews revealed deliberators were particularly struck by their experience hearing and understanding other points of view, sometimes surprised at the group's ability to reach agreement, and occasionally activated to volunteer or advocate. Conclusions Deliberations using a structured group exercise to engage minority and underserved community members in setting health research priorities met some important criteria for a fair, credible process that could inform policy. Deliberations appeared to change some opinions, improved some knowledge, and were judged by participants worth using to inform policymakers.

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“…The survey was informed by the literature review that we had performed when developing our research proposal for peer-review at the Canadian Institutes of Health Research (CIHR), as well as by assessment frameworks that were published after we received funding [39]. The face validity of our survey was iteratively consolidated.…”

Section: Methodsmentioning

confidence: 99%

Assessment of a multimedia-based prospective method to support public deliberations on health technology design: participant survey findings and qualitative insights

Lehoux

Jiménez-Pernett

Miller

et al. 2016

BMC Health Serv Res

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BackgroundUsing a combination of videos and online short stories, we conducted four face-to-face deliberative workshops in Montreal (Quebec, Canada) with members of the public who later joined additional participants in an online forum to discuss the social and ethical implications of prospective technologies. This paper presents the participants’ appraisal of our intervention and provides novel qualitative insights into the use of videos and online tools in public deliberations.MethodsWe applied a mixed-method study design. A self-administered survey contained open- and close-ended items using a 5-level Likert-like scale. Absolute frequencies and proportions for the close-ended items were compiled. Qualitative data included field notes, the transcripts of the workshops and the participants’ contributions to the online forum. The qualitative data were used to flesh out the survey data describing the participants’ appraisal of: 1) the multimedia components of our intervention; 2) its deliberative face-to-face and online processes; and 3) its perceived effects.ResultsThirty-eight participants contributed to the workshops and 57 to the online forum. A total of 46 participants filled-in the survey, for a response rate of 73 % (46/63). The videos helped 96 % of the participants to understand the fictional technologies and the online scenarios helped 98 % to reflect about the issues raised. Up to 81 % considered the arguments of the other participants to be well thought-out. Nearly all participants felt comfortable sharing their ideas in both the face-to-face (89 %) and online environments (93 %), but 88 % preferred the face-to-face workshop. As a result of the intervention, 85 % reflected more about the pros and cons of technology and 94 % learned more about the way technologies may transform society.ConclusionsThis study confirms the methodological feasibility of a deliberative intervention whose originality lies in its use of videos and online scenarios. To increase deliberative depth and foster a strong engagement by all participants, face-to-face and online components need to be well integrated. Our findings suggest that online tools should be designed by considering, one the one hand, the participants’ self-perceived ability to share written comments and, on the other hand, the ease with which other participants can respond to such contributions.

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A Framework for Assessing the Quality of Democratic Deliberation: Enhancing Deliberation as a Tool for Bioethics

Cited by 42 publications

References 17 publications

How Important Is ‘Accuracy’ of Surrogate Decision-Making for Research Participation?

How Important Is ‘Accuracy’ of Surrogate Decision-Making for Research Participation?

Evaluating community deliberations about health research priorities

Assessment of a multimedia-based prospective method to support public deliberations on health technology design: participant survey findings and qualitative insights

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