Background: The experiential voice of older adults living with frailty is largely absent from health research. While many such adults have the capacity to participate in the design, development, and delivery of research, researchers traditionally don’t recognize such capacity, may be unsure how to seek input, or may not fully appreciate the extent to which such input can improve the research enterprise.
Proposed Solution: The solution proposed is to expand and diversify the voice of older adults living with frailty in PCOR/CER by working with diverse stakeholders to translate the Bureau of Sages engagement model into a model that could be easily disseminated and implemented into more communities. This solution builds on the successful engagement of nursing home community and stay-at-home older adults in the current Bureau of Sages model. In this model, the older adults engage with researchers through technology or in person to add their expertise to research.
Objectives: This project aims to expand and diversify the pool of researchers, providers, and Long-Term Services and Supports (LTSS) recipients who have the knowledge, skills, and opportunity to collaborate with each other in PCOR/CER. The objectives are to: work with partners and stakeholders to identify translatable aspects of the current Bureau of Sages model; build on and refine the existing materials to create resources for researchers, providers, and older adults for use in developing and implementing Bureau of Sages translations; and establish an online community where bureaus and researchers would go to access resources, learn about relevant PCOR/CER findings, access technical assistance, and find ways to connect.
Activities: Facilitating an advisory panel, conducting stakeholder interviews, engaging researchers through training and interest groups, creating an online bureau community, and supporting dissemination and implementation of new diverse bureaus.
Outputs: Practical and concise resources along with issue briefs and webinars, and four new bureaus, each partnered with a research institution and each with its own mission, vision, and values.
Outcomes: The number of engagement bureaus in diverse LTSS settings across the country will increase; academics will incorporate an expanded/diversified contribution from older adults receiving LTSS into their research; older adults in any setting will have the opportunity to contribute meaningfully to PCOR/CER; and misconceptions that frail older adults are unable to contribute to research will be reduced.
Patient and Stakeholder Engagement Plan: The project team will engage with older adults, providers, researchers, clinicians, and policy makers. Stakeholders will be engaged in a variety of roles including serving on an advisory panel, contributing to information interviews, and in facilitating new bureaus. Stakeholders’ expertise spans the expansive range of populations and settings associated with frail older adults.
Project collaborators: CJE will form a partnership with the LeadingAge LTSS Center @UMass Boston and the Scripps Gerontology Center at Miami University in Oxford, Ohio to lead this project. Both the LeadingAge LTSS Center and Scripps have large networks of researchers and students interested in aging, as well as nursing homes and other LTSS communities that they will work with to establish new bureaus and engage in PCOR/CER.
^Amy Eisenstein, PhD, MA, was the original project lead on this study.