Engaging the Public in Decisions about Health Research—The Role of Public Deliberation

Siegel, Joanna E.; Heeringa, Jessica; Carman, Kristin L.

doi:10.1001/virtualmentor.2013.15.1.pfor2-1301

Cited by 12 publications

(2 citation statements)

References 22 publications

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“…Consistent with existing stakeholder engagement recommendations and frameworks, 70,71 we believe wider community discussions, structured forums, and deliberative sessions are necessary to clarify the nature of different PCT interventions and the range of associated potential benefits and burdens. This is important not only for “buy-in,” but also to support institutional and national policy development and policy evaluation to ensure regulatory interpretations align with societal expectations and values.…”

Section: Additional Implications For Stakeholder Engagement and Respomentioning

confidence: 71%

Harms, benefits, and the nature of interventions in pragmatic clinical trials

et al. 2015

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To produce evidence capable of informing healthcare decision making at all critical levels, pragmatic clinical trials (PCTs) are diverse both in terms of the type of intervention (medical, behavioral, and/or technological) and the target of intervention (patients, clinicians, and/or healthcare system processes). Patients and clinicians may be called on to participate as designers, investigators, intermediaries, or subjects of PCTs. Other members of the healthcare team, as well as the healthcare system itself, also may be affected directly or indirectly before, during, or after study implementation. This diversity in the types and targets of PCT interventions has brought into focus the need to consider whether existing ethics and regulatory principles, policies, and procedures are appropriate for PCTs. Specifically, further examination is needed to identify how the types and targets of PCT interventions may influence the assessment of net potential risk, understood as the balance of potential harms and benefits. In this paper, we build on scholarship seeking to align ethics and regulatory requirements with potential research risks and propose an approach to the assessment of net risks that is sensitive to the diverse nature of PCT interventions. We clarify the potential harms, burdens, benefits, and advantages of common types of PCT interventions and discuss implications for patients, clinicians, and healthcare systems.

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Section: Additional Implications For Stakeholder Engagement and Respomentioning

confidence: 71%

Harms, benefits, and the nature of interventions in pragmatic clinical trials

et al. 2015

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“…5 All deliberative methods, however, follow certain core principles, including exchange of information, discussion of alternate choices/options, and consensus building. 6 In this study, we used Deliberative Democracy Forums (DDFs). This approach has been developed and refined over many years by the Kettering Foundation (a nonprofit organization engaging citizens in collective action) and follows well-established procedures to prepare for forums (i.e., "framing" sessions), facilitate deliberation (i.e., weighing the pros and cons of alternate choices/solutions), find common ground (i.e., shared values), and identify collective and individual action.…”

Section: Introductionmentioning

confidence: 99%

Using Deliberative and Qualitative Methods to Mobilize Community Around the Mental Health Needs of Rural African Americans

Cheney

Haynes

Olson

et al. 2018

Health Systems & Reform

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Deliberative methods obtain informed and well-reasoned public input on health topics but are rarely accompanied by rigorous qualitative methods that can ground findings in community members' shared experiences. In this project, we used Deliberative Democracy Forums, a deliberative process, to bring diverse community members together to collectively discuss mental health among rural African Americans, brainstorm solutions to address mental health needs, deliberate alternate solutions, and indicate steps for future action. By using rigorous qualitative methods to document the deliberative process and analyze deliberative dialogue, we produced a strong evidence base to inform future health care policy and research. In this article, we document our approach, present forum findings, and discuss the impact of deliberation on policy and research. We conclude that the combination of deliberative process and qualitative methods used in our project can produce a deeply contextualized understanding of mental health and identify community-initiated solutions to address mental health needs in resource-poor communities, which can help guide public health research and provide an evidence base for public health policy.

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Are We Missing the Mark? The Implementation of Community Based Participatory Education in Cancer Disparities Curriculum Development

Fritz

Naylor

Watkins

et al. 2014

J. Racial and Ethnic Health Disparities

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Objective The Chicago south side, even more so than national populations, continues to be burdened with widening gaps of disparities in cancer outcomes. Therefore, Chicago community members were engaged in addressing the following content areas for a cancer disparities curriculum: (1) the south side Chicago community interest in participating in curriculum design, (2) how community members should be involved in designing cancer disparities curriculum, and (3) what community members believe the curriculum should address to positively impact their community. Methods Eighty-six community members from 19 different zip code areas of Chicago attended the deliberative session. A survey composed of three quantitative and three short-answer content questions was analyzed. Results The majority of participants were from the south side of Chicago (62 %) and females (86 %). Most, 94 %, believed community members should be involved in cancer disparities curriculum development. Moreover, 56 % wanted to be involved in designing the curriculum, and 61 % reported an interest in taking a course in cancer disparities. Three categorical themes were derived from the qualitative questions: (1) community empowerment through disparities education—“a prescription for change,” (2) student skill development in community engagement and advocacy training, and (3) community expression of shared experiences in cancer health disparities. Conclusion The community provided valuable input for cur-ricular content and has an interest in collaborating on cancer disparities curriculum design. Community participation must be galvanized to improve disparities curricular development and delivery to successfully address the challenges of eliminating disparities in health.

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Engaging the Public in Decisions about Health Research—The Role of Public Deliberation

Cited by 12 publications

References 22 publications

Harms, benefits, and the nature of interventions in pragmatic clinical trials

Harms, benefits, and the nature of interventions in pragmatic clinical trials

Using Deliberative and Qualitative Methods to Mobilize Community Around the Mental Health Needs of Rural African Americans

Are We Missing the Mark? The Implementation of Community Based Participatory Education in Cancer Disparities Curriculum Development

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