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

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.