Community engagement in patient-centered outcomes research: Benefits, barriers, and measurement

Abstract

Introduction:This study employed the Delphi method, an exploratory method used for group consensus building, to determine the benefits and challenges associated with community engagement in patient-centered outcomes research.Methods:A series of email surveys were sent to the Patient-Centered Outcomes Research Institute (PCORI)-funded researchers (n = 103) in New England. Consensus was achieved through gathering themes and engaging participants in ranking their level of agreement over three rounds. In round one, participant responses were coded thematically and then tallied. In round two participants were asked to state their level of agreement with each of the themes using a Likert scale. Finally, in round three, the group was asked to rank the round two themes based on potential impact.Results:Results suggested the greatest benefit of community engagement is that it brings multiple perspectives to the table, with 92% ranking it as the first or second most important contribution. Time was ranked as the most significant barrier to engaging community. Strategies to overcome barriers to community engagement include engaging key stakeholders early in the research, being kind and respectful and spending time with stakeholders. The most significant finding was that no researchers reported having specific measures to evaluate community engagement.Conclusion:Community engagement can enhance both research relevance and methodology when researchers are engaged in meaningful collaborations. Advancing the science of community engagement will require the development of evaluation metrics to examine the multiple domains of partnership.

Health disparities and equity in the era of COVID-19

“…It is important, however, that we understand that lasting changes are only possible by rebuilding trust with communities and demonstrating the trustworthiness of the scientific community [37,38]. Trust, however, does not lend itself to "warp-speed" rebuilding efforts, particularly in racial/ethnic minority populations [39]. In order to demonstrate trustworthiness, researchers and the academic institutions they represent must renew their commitment to cultivating and sustaining a culture of scientific transparency, ethical conduct, and responsible community engagement [38,40].…”

“…In order to demonstrate trustworthiness, researchers and the academic institutions they represent must renew their commitment to cultivating and sustaining a culture of scientific transparency, ethical conduct, and responsible community engagement [38,40]. This requires that we engage community members early on, value their lived experience and knowledge of community norms, are transparent with our motives, share our data, and ultimately promote power balance [38,39]. A community-engaged partnership highlights the shared values of the scientific community and the general public: public health, safety, and inclusivity [37].…”

Understanding patient needs and gaps in radiology reports through online discussion forum analysis

“…The involvement of patients in the therapeutic and diagnostic stage has positive benefits [ 12 – 15 ]. Good patient understanding of health reduces the time a doctor must spend explaining treatment steps [ 16 ].…”

Assessment of Stakeholder Engagement in a Down Syndrome Research Study

“…By bringing their lived experiences while research teams craft study procedures and dissemination plans, patients have the potential to enrich the relevance, practical feasibility, and, ultimately, impact of the research being conducted. [1][2][3] For patients who are children, or who have an intellectual or cognitive disability that may prevent their full participation as advisors, adopting a more holistic viewpoint on who may participate on their behalf may be considered. The inclusion of family caregivers, health professionals, community advocates, and/or subject matter experts all can provide important feedback on what is important to patients who are less able to communicate their needs, values, and preferences.…”

“…The inclusion of family caregivers, health professionals, community advocates, and/or subject matter experts all can provide important feedback on what is important to patients who are less able to communicate their needs, values, and preferences. 3 Our research team recently conducted a national randomized controlled trial of an online health care platform for caregivers of individuals with Down syndrome, a genetic condition oftentimes accompanied by complex co-occurring medical conditions. 4 With this platform, called Down Syndrome Clinic to You (DSC2U), family caregivers complete a comprehensive, online intake form and then receive an automatically generated checklist of personalized recommendations with a companion plan to share with the primary care provider.…”