Background: With the growth of patient-centered outcomes research (PCOR), partnerships between researchers and patients have presented novel opportunities for disseminating results. A large gap exists in disseminating patient-centered research results to older adult patient end-users. We sought to examine the experiences of patient/community partners in disseminating PCOR results and characterize lessons learned that may facilitate future researcher-patient/community dissemination partnerships. Methods: Patient/community partners who participated in geriatrics-focused PCORI-funded research and were active in disseminating results, as part of their planned activities, were recruited for one-to-one qualitative interviews. Constant comparative and thematic analysis were used to identify and describe common themes that emerged in a survey of open-ended questions. Results: Ten individuals (four community partners, six patients) aged 55–87 years were interviewed. Analysis revealed that for successful dissemination, subjects felt it was vital to reach out to people affected by the results, leverage personal stories, and tap into pre-developed programming. Patient/Community partners identified potential audiences through word-of-mouth, community requests, and mapping a list of audiences—targeting those directly affected as well as those who worked with the audience (e.g., not specifically medical). Patient/community partners recommended that researchers engage patient/community partners for suggestions on audiences, show empathy, include diverse populations, and maintain a community-focus. One community partner stated, “Why wouldn’t we help disseminate results? It’s a no-brainer. We know people!” Conclusion: Patient/community partners provide effective ways to communicate results, new audiences to reach, improved communication with different audiences, and improved credibility of the findings. The lessons learned have implications for assisting future research-patient/community partnerships in the dissemination of their patient-centered research.
Background Geriatrics research generally cumulates in academic journal publications, with variable diffusion to patients and communities. PlanYourLifespan.org is a free, evidence‐based tool that assists older adults, and their loved ones, to better understand and plan for their long‐term support needs. There is a need to effectively disseminate geriatrics research, such as PlanYourLifespan.org, to communities that may directly benefit from this research. Objective To leverage community‐based stakeholder leaders, utilizing a train‐the‐trainer program, to disseminate PlanYourLifespan.org and evaluate the extent of the dissemination. Methods Using a train‐the‐trainer strategy, community stakeholder leaders from the original study paired up with newly recruited community stakeholder leaders. New community stakeholder leaders were trained on dissemination, using a “how‐to‐disseminate” web‐based toolkit—developed as part of this project. Newly trained community stakeholder leaders subsequently trained additional community stakeholder leaders who conducted and tracked dissemination activities in their communities. Google Analytics tracked newly created PlanYourLifespan.org accounts, login sessions, and daily website visitors. Results Five newly trained community stakeholder leaders disseminated PlanYourLifespan.org over a three‐month period. Cumulatively, on the day of the dissemination activity, there were 11,361 PlanYourLifespan.org log‐ins (average: 378.7 log‐ins/activity day), 89,068 log‐ins (average: 2969 log‐ins/activity week) one‐week after the activity, and 319,154 log‐ins (average: 10,638 log‐ins/activity month) one month after the dissemination activity. Approximately 9.4 new PlanYourLifespan.org accounts were created one‐week post dissemination activity and over 1100 new accounts in the one‐month period thereafter. Conclusions Wide dissemination of PlanYourLifespan.org occurred by leveraging a train‐the‐trainer approach with community stakeholder leaders. Researchers should consider collaborating early on with community stakeholders to meaningfully disseminate results.
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