Community Engagement for Big Epidemiology: Deliberative Democracy as a Tool

Abstract

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.

Returning Results: Let's Be Honest!

“…Honesty is the foundation needed to create trust between physicians, researchers and research participants, patients, or the public. Trust is critical for any biobank project (Halverson and Ross, 2012b;McWhirter et al, 2014;Ma et al, 2015) to encourage participation, that is, transparent and truthful communication is not only ethically and legally required to ensure valid consent but it is also important to render biobank research possible, which depends on the willingness of a great number of participants to make their samples and data available.…”

Public's Views toward Return of Secondary Results in Genomic Sequencing: It's (Almost) All about the Choice

“…The DD approach involves soliciting the informed voices of the general public in policy-making through a process of in-depth education and peer deliberation (Fishkin, 2006; Gastil & Keith, 2005; Solomon, Gusmano, & Maschke, 2016; Thompson, 2008). DD methodology is being used to elicit the informed and deliberative input of the general public on a variety of complex bioethical issues, including biobank research, flu pandemic resource allocation, surrogate consent for dementia research, and cancer screening (Carman et al, 2015; Kim et al, 2011; McWhirter et al, 2014; Rychetnik et al, 2013; Silva et al, 2012). …”

Considerações Teóricas Do Diálogo Deliberativo: Contribuições Para Prática, Política E Pesquisa Em Enfermagem

“…Finally, some researchers include a participant evaluation asking questions about the session, focusing on the process and procedures, and whether all key stakeholders were present or not. [15][16][17][18][19][20][21] Impact and outcomes from the meeting may also be evaluated by the participants. These data provide a comprehensive picture of the effectiveness of the dialogue.…”

“…9 Considering this method as a means to bridge research with action, researchers argue that it can be an alternative to traditional surveys, interviews, and focus groups for generating data when the objective of the research is focused on influencing practice or policy. 9,16 Researchers using deliberative dialogue generate collective data, because participants together create new understanding through the combination of synthesized evidence and their own tacit knowledge. 9 In a qualitative study to improve the integration of nurse practitioners in primary healthcare settings, 29 deliberative dialogue was used as an approach to data collection.…”

“…15 However, there has been very limited experience in nursing with deliberative dialogue. Up to now, much of the use of the method has been focused on macro-level policy formulation in some countries such as Canada, [16][17] the United States, 18 and Australia. 13 Some attention has been given to its use as a qualitative data collection method, particularly in Canada.…”