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Facilitating Meaningful Engagement on Community Advisory Committees in Patient-Centered Outcome Research.

ABSTRACT: BACKGROUND:Reflecting on the processes and practices used to engage community stakeholders in patient-centered outcome research strengthens participation at the project level and contributes more broadly to developing knowledge about effective participatory processes and methods. OBJECTIVES:We conducted a process evaluation of ongoing activities of a Patient Advisory Committee (PAC) formed around the development of an individualized decision aid for older women with early stage breast cancer. METHODS:In-depth qualitative interviews were conducted with PAC members to obtain their input on the effectiveness of the project's participatory approach and identify barriers to participation. Results and Lessons Learned: Although there was general support for the aims of the study, patient knowledge gaps and meeting facilitation style limited participation. Members made suggestions on improving collaboration within the group that, when implemented, resulted in increased participation and revitalized interest in the project. CONCLUSIONS:Results suggest that engaging committee members in a process of evaluation and collective reflection during a research collaboration can break down barriers to collaboration, build relationships, create opportunities for co-learning and strengthen researchers' capacity to engage meaningfully with stakeholders.

SUBMITTER: Kelly G

PROVIDER: S-EPMC5679445 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature

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Facilitating Meaningful Engagement on Community Advisory Committees in Patient-Centered Outcome Research.

Kelly Gabrielle G Wang Shi-Yi SY Lucas Georgina G Fraenkel Liana L Gross Cary P CP

Progress in community health partnerships : research, education, and action 20170101 3

<h4>Background</h4>Reflecting on the processes and practices used to engage community stakeholders in patient-centered outcome research strengthens participation at the project level and contributes more broadly to developing knowledge about effective participatory processes and methods.<h4>Objectives</h4>We conducted a process evaluation of ongoing activities of a Patient Advisory Committee (PAC) formed around the development of an individualized decision aid for older women with early stage br ...[more]

PMID: 29056616

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Project description:Introduction/objectivesThe engagement of patients and other stakeholders is a critical element in the design of patient-centered outcomes research studies. However, methodology for scalable engagement in research management particularly activities such as operationalization of principles and setting of priorities is not well-developed. The objective of this study is to describe a novel approach for scalable stakeholder engagement in research aligned with the Patient-Centered Outcomes Research Institute (PCORI) engagement principles, which was evaluated in a national clinical data research network.Materials and methodsPatient, patient advocate, clinician, and researcher stakeholders were recruited from clinical sites, as well as social media sites related to the 3 conditions of focus, heart failure, obesity, and Kawasaki disease. The engagement strategy was designed, implemented, and mapped to the PCORI engagement principles. Evaluation included internal assessment and quantitative measures of online engagement.ResultsWe operationalized the PCORI principles with 12 stakeholder engagement strategies and convened stakeholder advisory boards and online research prioritization panels to determine research priorities in a rigorous, deliberative process. A total of 46 advisors (20 patients) and 339 panelists (159 patients) actively participated. There were not significant differences between patients and clinicians in level of online engagement. Nonetheless, while patients reported a slightly greater challenge with following online discussion, they overall had a more favorable opinion about use of the online format.Discussion/conclusionAn efficient way to engage large numbers of representative stakeholders in research is a necessary first step to assure the public of trustworthy use of data networks for health research. This paper describes a comprehensive approach to engagement in patient-centered outcomes research management that informs ongoing development of rigorous methodologies in this area.

Project description:IntroductionDespite the widely recognized ethical and practical benefits of community engagement in HIV research, epistemic injustice persists within the field. Namely, the knowledge held by communities disproportionately affected by HIV is systematically afforded less credibility than that of more privileged academic researchers. In order to illustrate what this looks like in practice, we synthesized the extent of reporting on community engagement within recent high-impact HIV intervention research papers. However, we also posit that the HIV research sector has the potential to devise and showcase world-leading examples of equitable research-community partnerships and suggest actionable key steps to achieving this goal.DiscussionIn the absence of reporting requirements within the publishing process, it is difficult to infer whether and how the community have been consulted in the design, implementation, analysis and/or interpretation of findings. As an illustrative exercise, we offer a rapid synthesis of the extent of reporting on community engagement in HIV research from 2017 to 2019, which highlighted sporadic and very low rates of reporting of community engagement in recent high-impact HIV intervention studies. Of note is that none of the included studies reported on community engagement through all stages of the research process. There were also discrepancies in how community involvement was reported. We provide three actionable recommendations to enhance reporting on community engagement in HIV research: (1) community-led organizations, researchers and scientific journals should band together to develop, publish and require adherence to standardized guidelines for reporting on community involvement in HIV research; (2) research funders should (continue to) require details about how relevant communities have been engaged prior to the submission of funding requests; and (3) researchers should take proactive measures to describe their engagement with community organizations in a clear and transparent manner.ConclusionsThere is a clear and urgent need for guidelines that facilitate transparent and consistent reporting on community engagement in HIV intervention research. Without standardized reporting requirements and accountability mechanisms within the research sector, the extent of meaningful community engagement cannot be established and may remain a catchphrase rather than reality.

Project description:BACKGROUND:In 2010, the Patient Centered Outcomes Research Institute (PCORI) was created to fund patient-centered research that meaningfully engages stakeholders impacted by that research. As a result, investigators became interested in understanding who are appropriate stakeholders and what meaningful engagement in research looks like (6, 8-10). OBJECTIVE:To understand how and when stakeholder engagement worked well and identify areas for enhancing engagement in a PCORI-funded research study of peer-to-peer support of older adults in three communities across the USA. DESIGN:Qualitative interview study. PARTICIPANTS:Twelve members of the inter-disciplinary research team. APPROACH:Interviews were conducted via phone, recorded, and transcribed. Transcripts were analyzed using a constant comparative method to identify themes. Transcripts were independently coded; coded themes were discussed by a small group of the research team to check interpretation and clarify meaning. Once initial themes were identified, the interviews and codes were shared with an external consultant who recoded all 12 transcripts and conducted further analysis and interpretation. Documentation from research meetings was used to validate our findings. KEY RESULTS:Strategies for facilitating meaningful engagement in the partnership, proposal, study design, and planning phase were very similar to community-based participatory research and include the use of community to identify research needs, equitable compensation and leadership, and budgeting for engagement activities. Strategies in the data collection phase include the use of cultural brokers, weekly data calls between the academic PI and imbedded research assistants, and maintaining joint ownership for research. CONCLUSIONS:Major funding institutions (e.g., NIH, PCORI) recognize that community engagement leads to higher quality, more meaningful research (7, 21). Our results support that assumption and in addition, suggest an investment in engagement strategies at the onset of a research project and the use of cultural brokers can greatly contribute to the success of implementing a large, multi-site research project.

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Facilitating Meaningful Engagement on Community Advisory Committees in Patient-Centered Outcome Research.

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Facilitating Meaningful Engagement on Community Advisory Committees in Patient-Centered Outcome Research.

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