Engaging a Diverse Patient and Care Partner Council to Refine Dementia Care Digital Tools

HILLARY LUM, MD, PhD
JESSICA CASSIDY, LMSW
University of Colorado School of Medicine

There is a need to reduce disparities in the care of persons with dementia and their family care partners (i.e., dementia dyads). The use of clinical digital tools may improve communication but may also be limited by digital health equity issues. Engagement with dementia dyads as research stakeholders can help identify priorities for testing in pragmatic clinical trials. To promote communication between dementia dyads and clinical teams, we engaged with stakeholders to identify priorities and refinements to digital tools. We describe pragmatic methods for stakeholder recruitment and involvement in a participatory action research process.

We convened a council, “Memory Research Partners in Caring and Technology” comprised of 18 individuals of diverse background, including three dementia dyads, two additional family care partners, and 10 community members with experience as patient research partners. The council met six times over seven months (two in person, four virtually).

We recruited research partners by collaborating with an existing patient research council, clinicians from dementia clinical settings, and community organizations. Pragmatic stakeholder engagement methods included: a) brief talks by expert guest speakers; b) participatory methods such as a World Café and small group discussions with Google Jamboards at virtual meetings; c) mailing preparatory educational materials; and d) contacting partners between meetings by phone to invite any additional input. Through these collaborative methods, the direction of this study was informed by research partner perspectives regarding areas of need to existing systems of care, as well as digital tools. We used rapid qualitative analysis methods to identify, share, and clarify findings from each meeting. Partners were compensated for their time and expertise.

Research partner engagement was high with only one participant unable to continue due to physical health issues. Virtual meetings allowed continuity when COVID-19 imposed barriers to meeting in-person and when care partners were juggling caregiving needs. Several research partners voluntarily discovered and shared pertinent materials with the University team indicating commitment to the project. Using multiple stakeholder engagement methods, research partners and the University team collaboratively identified key gaps and priorities related to dementia care communication and the use of digital tools. The use of multiple and pragmatic stakeholder engagement methods supported active and consistent engagement.

We engaged with patients, care partners, and community members of diverse backgrounds in a participatory research process to prioritize and refine digital health tools. The use of these methods yielded rich insight on user experiences which will inform future aims of supporting dementia care coordination through digital tools.