Stakeholder Perspectives on Creating and Maintaining Trust in Community–Academic Research Partnerships

Frerichs, Leah; Kim, Mimi; Dave, Gaurav; Cheney, Ann M.; Lich, Kristen Hassmiller; Jones, Jennifer R.; Young, Tiffany L.; Cené, Crystal W.; Varma, Deepthi S.; Schaal, Jennifer; Black, Adina; Striley, Catherine W.; Vassar, Stefanie D.; Sullivan, Greer; Cottler, Linda B.; Brown, Arleen F.; Burke, Jessica G.; Corbie-Smith, Giselle

doi:10.1177/1090198116648291

Cited by 47 publications

(44 citation statements)

References 38 publications

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“…Available frameworks suggest structures for partnerships, [13][14][15][16] and literature promotes broad principles such as addressing issues of power and equity [17][18][19][20][21][22][23][24][25] and developing relationships of trust. [20][21][22][24][25][26][27][28][29][30][31] However, it can be difficult for teams, particularly those new to this type of work, to operationalize abstract structures and principles in the specific context of their research project.In this article, we draw from our collective years of experience as patients, caregivers, clinicians, other stakeholders and academic researchers in partnered projects to offer 12 practical lessons we have learned about how to better conduct partnered research. These lessons are intended for all people working in such projects, including patients, caregivers, clinicians, researchers, policymakers, and others.…”

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confidence: 99%

Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders

Witteman

Dansokho

Colquhoun³

et al. 2018

J GEN INTERN MED

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Research increasingly means that patients, caregivers, health professionals, other stakeholders, and academic investigators work in partnership. This requires effective collaboration rooted in mutual respect, involvement of all participants, and good communication.Having conducted such partnered research over multiple projects, and having recently completed a project together funded by the Patient-Centered Outcomes Research Institute, we collaboratively developed a list of 12 lessons we have learned about how to ensure effective research partnerships. To foster a culture of mutual respect, hold early in-person meetings, with introductions focused on motivation, offer appropriate orientation for everyone, and maintain awareness of individual and project goals. To actively involve all team members, it is important to ensure sufficient funding for everyone's participation, to ask for and recognize diverse contributions, and to seek the input of quiet members. To facilitate good communication, teams should carefully consider labels, avoid jargon and acronyms, judiciously use homogeneous and heterogeneous subgroups, and keep progress visible. In offering pragmatic, actionable lessons we have learned through our separate and shared experiences, we hope to help foster more patient-centered research via productive and enjoyable research collaborations. INTRODUCTIONHealth research teams increasingly include patients, caregivers, clinicians, and other stakeholders whose primary careers are not health research. This may occur because team leaders are convinced of the merits of such an approach, because funders or publishers require it, or both. 1-4 Such partnerships are intended to increase the relevance of research to those who might benefit from it and thus to reduce research waste. 5 This is an excellent and laudable aim; however, there is relatively little practical guidance available about how to effectively conduct such partnered research.Previous reviews and evaluations demonstrate four points about conducting partnered research. First, research teams with patients, caregivers, and other stakeholder team members tend to involve these stakeholders more at earlier stages in the project than at later stages. 6,7 Second, people coming into projects without a research background may require orientation in order to participate fully. 8 Third, benefits of partnership may be difficult to formally assess. 9 Fourth, time requirements are a frequent concern for everyone. 7,10 These reviews offer valuable evidence syntheses relevant to partnership, as do recommendations from long-standing traditions of methods 558JGIM such as community-based participatory research 11 and participatory action research. 12 However, as partnered research expands across research types and funding opportunities, more people are engaging in team structures that are new to them. Available frameworks suggest structures for partnerships, [13][14][15][16] and literature promotes broad principles such as addressing issues of power and equity [17][18][19...

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confidence: 99%

Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders

Witteman

Dansokho

Colquhoun³

et al. 2018

J GEN INTERN MED

View full text Add to dashboard Cite

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“…This also increases trust between the community and the research enterprise, one of the goals of HealthStreet and the library scientists. 13 HealthStreet staff have spent time and energy developing relationships with underserved members of the community and are looked to as a trusted resource. This makes them the ideal host or contact for training on trustworthy health information resources.…”

Section: Discussionmentioning

confidence: 99%

Piloting Consumer Health Information Services in Collaboration with a Community Research Engagement Program

Ansell

Tennant

Piazza³

et al. 2017

Medical Reference Services Quarterly

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At an academic health science center, librarians partnered with a community research engagement program to offer a suite of consumer health information services. The services included training staff in the use of online consumer health resources, purchasing a print collection of monographs, and creating a guide to both the online and print resources for staff use. Focus groups were conducted to assess information needs, and the workshop attendees' online health information competency was assessed pre- and post-session. This paper details planning and intervention efforts, and proposes future activities to meet the information needs of HealthStreet and its clients.

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“…The familiar faces of staff who are local residents themselves, and cultural insiders, helped residents engage with the survey at the two other sites as well. Building trust with community stakeholders, such as our partner organizations, is often a necessary precursor to engaging and gaining trust with the greater community (Christopher et al 2008;Moreno et al 2009;Kerstetter 2012;Frerichs et al 2017). Working with "insider" community organizations is particularly important in post-disaster situations where distrust of outsiders is often high, especially amongst the most vulnerable populations (Wells et al 2013).…”

Section: Trust and Relationship-buildingmentioning

confidence: 99%

‘Come Back at Us’: Reflections on Researcher-Community Partnerships during a Post-Oil Spill Gulf Coast Resilience Study

et al. 2019

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This paper presents findings from eight post-hoc interviews with individuals representing the key community partner organizations that facilitated and hosted data collection for an in-person mixed-methods survey about disaster resilience and preparedness in three communities on the Gulf Coast (U.S.) impacted by the Deepwater Horizon oil spill and numerous disasters from natural hazards. We submit our analysis of these follow-up interviews with community partners as a case study to provide a set of recommendations for future community-engaged research practices, particularly in the field of environmental and disaster resilience. Input from community partners stressed the importance of engaging with local community brokers to enhance trust in research; researcher-partner communication; and researcher interaction with community residents that respects local knowledge and culture. The partners indicated that even communities that have often been the subjects of post-disaster studies are receptive to research participation, especially when the effects of disasters are long-term and ongoing. Recommendations include using research methodologies that are congruent with post-disaster community characteristics such as educational attainment; collaborating with community partners to disseminate research findings; and incorporating theories and practices that center critical reflection and consider power dynamics when working with communities that have experienced disaster and trauma.

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Stakeholder Perspectives on Creating and Maintaining Trust in Community–Academic Research Partnerships

Cited by 47 publications

References 38 publications

Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders

Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders

Piloting Consumer Health Information Services in Collaboration with a Community Research Engagement Program

‘Come Back at Us’: Reflections on Researcher-Community Partnerships during a Post-Oil Spill Gulf Coast Resilience Study

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