Starting in January 2016, the Leonard Schanfield Research Institute developed a sustainable research advisory bureau at Lieberman Center for Health and Rehabilitation as well as online using the Virtual Senior Center in partnership with Self Help during a 2-year project period funded by the Patient-Centered Outcomes Research Institute (PCORI Engagement Award #7206).
In Year 1, all members (older adults meeting in-person and virtually, staff, and researchers/clinicians) convened in quarterly half-day retreats. These retreats included presentations, paired and small group activities, and guided discussion with the goal of promoting co-learning and building engagement skills among participants. Additionally, the older adult members met with a research coach for more frequent meetings consisting of training in basic research concepts. This research training was primarily discussion-based and included hands-on activities. During all activities, Sages were provided with ample opportunities to share their experiences with aging, healthcare, and research.
In Year 2, retreats and meetings described above continued. In addition, Bureau members provided feedback to guest researchers, developed their own research proposal, and presented their experiences to the community and at a local aging conference.
Outcomes and conclusions: Sages developed the ability to engage with researchers through discussion, review and practice and provide input and guidance to research at all stages. They gave input to 17 researchers and physicians during the project period. Researchers and physicians reported better understanding of how experiences with frailty and care inform research agendas, topics, approaches, methods, and findings dissemination. Sages feel heard and empowered when talking with researchers and physicians. Their input has had an impact on how researchers’ conceptualize research related to aging, health care and long-term services and support.
Currently, Lieberman community members, Virtual Senior Center members, and research coaches meet bimonthly. Meetings consist of giving feedback to outside researchers, discussing relevant research studies and articles, and ongoing training related to research processes and advocating for their voice in research. Outside participants are welcome at these meetings.
In January 2018, the LSRI received a second award from the Patient-Centered Outcomes Research Institute (PCORI Engagement Award #7206) to expand and diversify the voice of older adults living with frailty in PCOR/CER by translating Bureau of Sages engagement model to be easily disseminated and implemented into more communities.