"Co-construction" in deliberative democracy: lessons from the French Citizens' Convention for Climate.
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SUBMITTER: Giraudet LG
PROVIDER: S-EPMC9214676 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Public trust is critical in any project requiring significant public support, both in monetary terms and to encourage participation. The research community has widely recognized the centrality of public trust, garnered through community consultation, to the success of large-scale epidemiology. This paper examines the potential utility of the deliberative democracy methodology within the public health research setting. A deliberative democracy event was undertaken in Tasmania, Australia, as part of a wider program of community consultation regarding the potential development of a Tasmanian Biobank. Twenty-five Tasmanians of diverse backgrounds participated in two weekends of deliberation; involving elements of information gathering; discussion; identification of issues and formation of group resolutions. Participants demonstrated strong support for a Tasmanian Biobank and their deliberations resulted in specific proposals in relation to consent; privacy; return of results; governance; funding; and, commercialization and benefit sharing. They exhibited a high degree of satisfaction with the event, and confidence in the outcomes. Deliberative democracy methodology is a useful tool for community engagement that addresses some of the limitations of traditional consultation methods.
| S-EPMC4282883 | biostudies-other
Project description:BackgroundSelecting effective implementation strategies to support guideline-concordant dental care is a complex process. We are drawing on data collected during the DISGO study to reflect on barriers we encountered in implementing a deliberative engagement process for discussing implementation strategies relevant to the evidence-based guideline targeted in this intervention. The goal is to identify factors that may influence the success of deliberative engagement as a technique to involve healthcare staff in identifying priorities for implementation strategies.MethodsWe drew on online chat transcripts from the deliberative engagement forums collected during the DISGO study. The chat transcripts were automatically generated for each discussion and captured the written exchanges between participants and moderators in all participating dental clinics. Chat transcripts were analyzed following a content analysis approach.ResultsOur findings revealed barriers to the successful implementation of deliberative engagement in the context of the DISGO study. Participants were not familiar with the materials that had been prepared for the forum and lacked familiarity with the topic of deliberation. Participants also did not share divergent viewpoints and reinforced existing ideas rather than introducing new ideas.ConclusionsIn order to ensure that obstacles that were encountered in this study are not repeated, it is important to carefully consider how staff can effectively be prepared for the deliberations. Participants must be familiar with the content of the guideline, and most questions about the content and evidence should be answered before the deliberative engagement sessions. If perspectives among staff on a guideline are homogenous, briefing materials should introduce perspectives that complement existing views among staff. It is also necessary to create an environment in which staff are comfortable introducing opinions that may not be held by the majority of colleagues.Trial registrationThis project is registered at ClinicalTrials.gov with ID NCT04682730. The trial was first registered on 12/18/2020. https://clinicaltrials.gov/ct2/show/NCT04682730 .
| S-EPMC10512594 | biostudies-literature
Project description:BackgroundStark gaps exist between projected health needs in a pandemic situation and the current capacity of health care and medical countermeasure systems. Existing pandemic ethics discussions have advocated to engage the public in scarcity dilemmas and attend the local contexts and cultural perspectives that shape responses to a global health threat. This public engagement study thus considers the role of community and culture in the ethical apportionment of scarce health resources, specifically ventilators, during an influenza pandemic. It builds upon a previous exploration of the values and preferences of Maryland residents regarding how a finite supply of mechanical ventilators ought to be allocated during a severe global outbreak of influenza. An important finding of this earlier research was that local history and place within the state engendered different ways of thinking about scarcity.ObjectiveGiven the intrastate variation in the themes expressed by Maryland participants, the project team sought to examine interstate differences by implementing the same protocol elsewhere to answer the following questions. Does variation in ethical frames of reference exist within different regions of the United States? What practical implications does evidence of sameness and difference possess for pandemic planners and policymakers at local and national levels?MethodsResearch using the same deliberative democracy process from the Maryland study was conducted in Central Texas in March 2018 among 30 diverse participants, half of whom identified as Hispanic or Latino. Deliberative democracy provides a moderated process through which community members can learn facts about a public policy matter from experts and explore their own and others' views.ResultsParticipants proposed that by evenly distributing supplies of ventilators and applying clear eligibility criteria consistently, health authorities could enable fair allocation of scarce lifesaving equipment. The strong identification, attachment, and obligation of persons toward their nuclear and extended families emerged as a distinctive regional and ethnic core value that has practical implications for the substance, administration, and communication of allocation frameworks.ConclusionsMaryland and Central Texas residents expressed a common, overriding concern about the fairness of allocation decisions. Central Texas deliberants, however, more readily expounded upon family as a central consideration. In Central Texas, family is a principal, culturally inflected lens through which life and death matters are often viewed. Conveners of other pandemic-related public engagement exercises in the United States have advocated the benefits of transparency and inclusivity in developing an ethical allocation framework; this study demonstrates cultural competence as a further advantage.
| S-EPMC7141421 | biostudies-literature
Project description:Despite the importance of scientific literacy, many foundational science courses are plagued by low student engagement and performance. In an attempt to improve student outcomes, an introductory biology course for nonscience majors was redesigned to present the course content within the framework of current events and deliberative democratic exercises. During each instructional unit of the redesigned course, students were presented with a highly publicized policy question rooted in biological principles and currently facing lawmakers. Working in diverse groups, students sought out the information that was needed to reach an educated, rationalized decision. This approach models civic engagement and demonstrates the real-life importance of science to nonscience majors. The outcomes from two semesters in which the redesign were taught were compared with sections of the course taught using traditional pedagogies. When compared with other versions of the same course, presenting the course content within a deliberative democratic framework proved to be superior for increasing students' knowledge gains and improving students' perceptions of biology and its relevance to their everyday lives. These findings establish deliberative democracy as an effective pedagogical strategy for nonmajors biology.
| S-EPMC5134941 | biostudies-literature
Project description:BACKGROUND:The secondary use of health data for research raises complex questions of privacy and governance. Such questions are ill-suited to opinion polling where citizens must choose quickly between multiple-choice answers based on little information. OBJECTIVE:The aim of this project was to extend knowledge about what control informed citizens would seek over the use of health records for research after participating in a deliberative process using citizens' juries. METHODS:Two 3-day citizens' juries, of 17 citizens each, were convened to reflect UK national demographics from 355 eligible applicants. Each jury addressed the mission "To what extent should patients control access to patient records for secondary use?" Jurors heard from and questioned 5 expert witnesses (chosen either to inform the jury, or to argue for and against the secondary use of data), interspersed with structured opportunities to deliberate among themselves, including discussion and role-play. Jurors voted on a series of questions associated with the jury mission, giving their rationale. Individual views were polled using questionnaires at the beginning and at end of the process. RESULTS:At the end of the process, 33 out of 34 jurors voted in support of the secondary use of data for research, with 24 wanting individuals to be able to opt out, 6 favoring opt in, and 3 voting that all records should be available without any consent process. When considering who should get access to data, both juries had very similar rationales. Both thought that public benefit was a key justification for access. Jury 1 was more strongly supportive of sharing patient records for public benefit, whereas jury 2 was more cautious and sought to give patients more control. Many jurors changed their opinion about who should get access to health records: 17 people became more willing to support wider information sharing of health data for public benefit, whereas 2 moved toward more patient control over patient records. CONCLUSIONS:The findings highlight that, when informed of both risks and opportunities associated with data sharing, citizens believe an individual's right to privacy should not prevent research that can benefit the general public. The juries also concluded that patients should be notified of any such scheme and have the right to opt out if they so choose. Many jurors changed their minds about this complex policy question when they became more informed. Many, but not all, jurors became less skeptical about health data sharing, as they became better informed of its benefits and risks.
| S-EPMC5895919 | biostudies-literature
Project description:ObjectivesTo verify whether a citizens' jury study is feasible to the Andalusian population and to know if women, when better informed, are able to answer the research question of whether the Andalusian Public Health System must continue offering screening mammography to women aged 50-69. The reasons for the pertinent decision and recommendations to the political authorities will be stated.DesignQualitative research study with the methodology of citizens' jury.SettingBreast cancer screening programme in Andalusia (Spain).ParticipantsThirteen women aged 50-69 with secondary school or higher education accepted to participate as a jury. Two epidemiologists were the expert witnesses. The main researcher was the neutral moderator.InterventionsJury met on Monday, 15 February 2016. The moderator indicated to the jury that it had to assess the screening programme's key benefits and main harm. On Tuesday, 16 February, the expert witnesses positioned for and against the programme. On Thursday, 18 February, the jury deliberated, reached final conclusions, submitted its vote and stated its recommendations to politicians. The deliberation session was transcribed and analysed with the support of ATLAS.ti.5.2 software.Primary and secondary outcome measuresFeasibility in the Andalusian population, women's vote and opinion, reasons for votes and recommendations to political authorities.ResultsEleven participants voted yes and two voted no. There are three reasons to vote 'yes': health, the test nature, and individual freedom. Some women invoke the lack of efficacy and the cost to justify their negative vote, at least in universal terms. On completion, they made suggestions to be submitted to the pertinent authorities for the improvement of information, psychology services and research.ConclusionsThe deliberative strategy is feasible and causes a favourable positioning regarding screening mammography, although information changes the opinion of some women, who desire informed decision making and to keep or increase medicalisation in their lives.
| S-EPMC5942446 | biostudies-literature
Project description:BackgroundNigeria is a significant tobacco market and influential country in Africa. Nigeria ratified the WHO Framework Convention on Tobacco Control (FCTC) in 2005. We reviewed Nigeria's tobacco control legislation since 2000 and compliance of the National Tobacco Control Act (NTCA) 2015 with the FCTC.MethodsWe reviewed the National Tobacco Control Bills 2011 (proposed by legislature) and 2014 (proposed by Executive), the NTCA 2015, and media stories on tobacco control from 2008 to 2017.ResultsThe NTCA, despite being more comprehensive than Nigeria's first Tobacco Smoking (Control) law of 1990, maintained provisions promoted by the tobacco industry, for example: allowing designated smoking areas in hospitality venues, higher educational institutions, and transportation venues; a loophole in the advertising restrictions allowing communications with consenting adults; and having the Manufacturers Association of Nigeria (MAN) (which includes tobacco companies) on the National Tobacco Control Committee charged with working with the Ministry of Health to implement the law. The industry is also directly involved with the Standards Organisation of Nigeria (SON) in preparing regulations on cigarette constituents and emissions. In an unprecedented step globally, the law requires that implementing regulations be approved by the National Assembly, giving the industry another opportunity to weaken this law further by lobbying the legislators to favor the industry. As of January 2018, the law was still not being enforced.ConclusionThe NTCA can be strengthened through implementation guidelines still being developed. The industry should be prevented from interfering with through MAN and SON, as required by FCTC Article 5.3.ImplicationsThe tobacco industry works to block Framework Convention on Tobacco Control implementation even after a country ratifies the treaty. The Nigerian case illustrates that it is essential for health authorities to remain vigilant and ensure that the tobacco industry does not play a decision-making role in the process of tobacco legislation and regulation either directly or indirectly. The unprecedented step of requiring approval of implementing regulations for the Nigerian law should not be allowed to become a precedent in other countries.
| S-EPMC6636173 | biostudies-literature
Project description:ObjectiveProstate-specific antigen (PSA) screening is controversial. A community jury allows presentation of complex information and may clarify how participants view screening after being well-informed. We examined whether participating in a community jury had an effect on men's knowledge about and their intention to participate in PSA screening.DesignRandom allocation to either a 2-day community jury or a control group, with preassessment, postassessment and 3-month follow-up assessment.SettingParticipants from the Gold Coast (Australia) recruited via radio, newspaper and community meetings.ParticipantsTwenty-six men aged 50-70 years with no previous diagnosis of prostate cancer.InterventionThe control group (n=14) received factsheets on PSA screening. Community jury participants (n=12) received the same factsheets and further information about screening for prostate cancer. In addition, three experts presented information on PSA screening: a neutral scientific advisor provided background information, one expert emphasised the potential benefits of screening and another expert emphasised the potential harms. Participants discussed information, asked questions to the experts and deliberated on personal and policy decisions.Main outcome and measuresOur primary outcome was change in individual intention to have a PSA screening test. We also assessed knowledge about screening for prostate cancer.ResultsAnalyses were conducted using intention-to-treat. Immediately after the jury, the community jury group had less intention-to-screen for prostate cancer than men in the control group (effect size=-0.6 SD, p=0.05). This was sustained at 3-month follow-up. Community jury men also correctly identified PSA test accuracy and considered themselves more informed (effect size=1.2 SD, p<0.001).ConclusionsEvidence-informed deliberation of the harms and benefits of PSA screening effects men's individual choice to be screened for prostate cancer. Community juries may be a valid method for eliciting target group input to policy decisions.Trial registration numberAustralian and New Zealand Clinical Trials Registry (ACTRN12612001079831).
| S-EPMC4281538 | biostudies-literature
Project description:The study compared the perception of ordinary citizens from Curitiba, Brazil (OB) and Clermont-Ferrand, France (OF), as well as OB, Brazilian veterinarians (VB), biologists (BB) and animal scientists (AB), concerning animal welfare and sentience. An online survey containing 18 open-ended, multiple choices and Likert scale questions was conducted from November 2014 to May 2016. The survey covered questions on demographics, perception of animal welfare, sheep welfare, sentience and animals' emotional capacities. In total, 1103 respondents participated in the survey (388 OB, 350 OF, 248 VB, 92 BB and 25 AB); data were compared using non-parametric tests. Brazilian citizens (46.9%) believed more than OF (3.7%) that welfare is not considered for farm animals and OB attributed higher scores of suffering to sheep during management procedures (median 4, severe suffering) than OF (3, moderate suffering). Additionally, OB gave higher scores of emotions to animals (5) than OF (4). In general, OB and BB had similar perceptions; OB and BB differed from VB and AB who were similar to each other. Citizens (46.9%) and BB (29.3%) believed more than VB (18.5%) and AB (12.0%) that welfare is not considered for farm animals; OB and BB also attributed higher scores of suffering to sheep during management procedures than VB and AB. Women and older respondents showed higher perception of animal welfare issues. There was no clear correlation between perception of animal welfare or sentience and education. Overall, ordinary citizens differed on their perceptions of welfare and sentience in livestock and specifically in sheep, and sheep suffering during management procedures. Ordinary citizens from Curitiba showed higher perception of animal welfare issues as compared to respondents from Clermont-Ferrand and to veterinarians and animal scientists. Ensuring a better consideration of welfare at farm level and in educational programs seems warranted according to the results of this study.
| S-EPMC6059438 | biostudies-literature
Project description:Latitudinal and altitudinal range shifts in response to climate change have been reported for numerous animal species, especially those with high dispersal capacities. In plants, the impact of climate change on species distribution or community composition has been documented mainly over long periods (decades) and in specific habitats, often forests. Here, we broaden the results of such long-term, focused studies by examining climate-driven changes in plant community composition over a large area (France) encompassing multiple habitat types and over a short period (2009-2017). To this end, we measured mean community thermal preference, calculated as the community-weighted mean of the Ellenberg temperature indicator value, using data from a standardized participatory monitoring scheme. We report a rapid increase in the mean thermal preference of plant communities at national and regional scales, which we relate to climate change. This reshuffling of plant community composition corresponds to a relative increase in the abundance of warm- versus cold-adapted species. However, support for this trend was weaker when considering only the common species, including common annuals. Our results thus suggest for the first time that the response of plant communities to climate change involves subtle changes affecting all species rare and common, which can nonetheless be detected over short time periods. Whether such changes are sufficient to cope with the current climate warming remains to be ascertained.
| S-EPMC6684971 | biostudies-literature