The State as Community in Community-Based Participatory Research

Goold, Susan Dorr; Rowe, Zachary; Calhoun, Karen; Campbell, Terrance R.; Danis, Marion; Hammad, Adnan; Salman, Cengiz; Szymecko, Lisa; Coombe, Chris M.

doi:10.1353/cpr.2016.0059

Cited by 11 publications

(18 citation statements)

References 16 publications

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“…community-based participatory research, health priorities, research priorities, resource allocation majority of community leaders and several leaders of research institutions, that engaged community partners in all phases of the project. 34 Adaptation was informed by documents and interviews with funders, research institutions, clinicians and community members.…”

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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Section: Introductionmentioning

confidence: 99%

Evaluating community deliberations about health research priorities

Goold¹,

Danis

Abelson

et al. 2019

Health Expectations

Self Cite

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“…To adapt CHAT to the unique needs and objectives of research priority setting for minority and underserved communities, we used a participatory process that engaged community partners in all phases of the project. A steering committee, composed of a majority of community leaders and several leaders of research institutions, accordingly adapted CHAT, informed by the following resources: Documents describing research priorities from governmental organizations, foundations, and research institutions. Key informant interviews with organizations that conduct and/or support research—how they categorize types of research and set priorities, how they present options and assess relative costs and what public input they would find valuable; …”

Section: Methodsmentioning

confidence: 99%

Members of Minority and Underserved Communities Set Priorities for Health Research

et al. 2018

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Engaging and involving underrepresented communities when setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values. Groups and individuals from minority and underserved communities strongly prioritized child health and mental health research, often choosing to invest at the highest possible level. Groups consisting of predominantly Native American or Arab American participants invested in culture and beliefs research at the highest level, while many groups did not select it at all. The priority given to culture and beliefs research by these groups illustrates the importance of paying special attention to unique preferences, and not just commonly held views, when getting public input on spending priorities for research. Context A major contributor to health disparities is the relative lack of resources—including resources for science—allocated to address the health problems of those with disproportionately greater needs. Engaging and involving underrepresented communities in setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values. We engaged minority and underserved communities in informed deliberations and report here their priorities for health research. Methods Academic‐community partnerships adapted the simulation exercise CHAT for setting health research priorities. We had participants from minority and medically underserved communities (47 groups, n = 519) throughout Michigan deliberate about health research priorities, and we used surveys and CHAT software to collect the demographic characteristics and priorities selected by individuals and groups. Findings The participants ranged in age (18 to 88), included more women than men, and were overrepresented by minority groups. Nearly all the deliberating groups selected child health and mental health research (93.6% and 95.7%), and most invested at the highest level. Aging, access, promote health, healthy environment, and what causes disease were also prioritized by groups. Research on mental health and child health were high priorities for individuals both before and after group deliberations. Access was the only category more likely to be selected by individuals after group deliberation (77.0 vs 84.0%, OR = 1.63, p = .005), while improve research, health policy, and culture and beliefs were less likely to be selected after group deliberations (all, p < .001). However, the level of investment in many categories changed after the group deliberations. Participants identifying as Black/African American were less likely to prioritize mental health research, and those of Other race were more likely to prioritize culture and beliefs research. Conclusions Minority and medically underserved communities overwhelmingly prioritized mental health and child health research in informed deliberations about spending priorities.

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“…What are their various roles? (Goold et al 2016). Ultimately, who is included, and to what degree, drives the direction of the research, representation in the data, and likely outcomes Madsen 2003, 2004).…”

Section: Community-engaged Researchmentioning

confidence: 99%

“…CER principles suggest that all stakeholders should be included as partners at the table; however, including every affected individual is not feasible. Projects that seek community representatives (Goold et al 2016) to serve as the voice of a broader community (Stoecker 2012) may function to empower those who are already relatively powerful, leaving out the most disenfranchised voices (Tumiel-Berhalter et al 2005). CER principles note the importance of forming a collaborative, equitable partnership, but they fall short on providing clear indications of who should be involved in the partnership, under what conditions, and how.…”

Section: Community-engaged Researchmentioning

confidence: 99%

Putting Research to Action: Integrating Collaborative Governance and Community-Engaged Research for Community Solar

2019

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Community solar involves the installation of a solar electricity system that is built in one central location with the costs and benefits distributed across voluntary investors who choose to subscribe and receive credits based on the generated energy. Community solar is gaining attention because of its potential to increase access to renewable energy and to democratize energy governance. This paper reflects on community-engaged research experiences in two rural community case studies in Michigan, USA, focusing on obstacles that were experienced during the research process rather than empirical findings from the research. We highlight difficulties we experienced to help advance a conceptual argument about incorporating collaborative governance strategies to improve community-engaged research for community energy projects. Our reflections illustrate challenges in community-engaged research that are associated with identifying who should be included in the decision-making process, sustaining participation and avoiding exploitation, establishing and communicating final decision-making power, and giving attention to outputs and outcomes of the research. We argue that collaborative governance strategies can help to address these challenges, as we experienced firsthand in our project.

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The State as Community in Community-Based Participatory Research

Cited by 11 publications

References 16 publications

Evaluating community deliberations about health research priorities

Evaluating community deliberations about health research priorities

Members of Minority and Underserved Communities Set Priorities for Health Research

Putting Research to Action: Integrating Collaborative Governance and Community-Engaged Research for Community Solar

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