By Steven Syre
During a new, 2-year project, the LeadingAge LTSS Center @UMass Boston will help bring the voices of older adults to the process of developing applied research studies.
Amy Eisenstein had a powerful idea. She wanted to see what would happen if researchers made a point of reaching out to nursing home residents and community-dwelling older adults, people who were typically not consulted during projects.
Eisenstein, director of the Leonard Schanfield Research Institute at CJE SeniorLife, tried to do exactly that at CJE’s Lieberman Center for Health and Rehabilitation in Chicago. Her plan was an immediate hit and soon led to the creation of the Bureau of Sages, a research advisory group that brings the voices of older adults to the process of developing research studies.
Robyn Stone, co-director of the LeadingAge LTSS Center @UMass Boston (formerly the LeadingAge Center for Applied Research) has been a member of the Chicago-based Bureau of Sages since March 2016. Now, the LTSS Center will help CJE spread the Bureau of Sages concept across the country in a new, 2-year project.
The overarching focus of the new project is to make the engagement of the older adult “business as usual” in the research world. The project team will:
- Identify specific elements that make the bureau successful, and how the model could achieve its goals in all communities. This work will be carried out in collaboration with the original Bureau of Sages stakeholders and an advisory board that includes the LTSS Center.
- Target a national community of community-dwelling older adults who use technology, and groups of persons who are beginning their journey with Alzheimer’s disease.
- Expand the Bureau of Sages model to support at least 4 new bureaus, 2 local academic communities, and 1 national academic community.
“Research points to the importance of engaging consumers in their health care decisions, but this project is one of the first of its kind to engage elders in the creation of research that is important to them,” said LTSS Center Fellow Erin McGaffigan. “That will ensure we are asking research questions that actually matter in their daily lives.”
The initial Bureau of Sages project was funded through a Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI). A grant from PCORI is also supporting the latest expansion plan.
Preparing Elders and Researchers for Collaboration
Eisenstein’s original idea seemed unusual to some researchers at the time. They had assumed for years that conducting research in nursing homes was too difficult, primarily due to residents’ functional and cognitive impairments.
But residents at the Lieberman Center responded enthusiastically, engaged by the idea of being consulted about the research questions most important to them. That led to the creation of the bureau itself, which included 7 Lieberman Center residents, 5 older adults living at home and participating in CJE’s Virtual Senior Center, along with 6 clinicians and researchers, including Stone.
The new effort will aim to implement effective engagement strategies to prepare older adults and researchers for their roles. The LTSS Center and its partners will:
- Work with stakeholders to identify translatable aspects of the current bureau model.
- Address obstacles noted in past work. These obstacles include the fact that stakeholders often do not recognize the benefits of engagement, know how to engage, or have access to an engagement structure.
- Build on and refine existing Bureau of Sages materials to create practical toolkits, orientation information, recruitment tips and other content.
- Develop training materials and webinars to support academic networks of researchers prepared to engage with bureaus.
- Establish an online community where bureaus and researchers could access resources and technical assistance, and connect with each other.
“The LTSS Center and our academic colleagues have the opportunity to be a part of something big,” said Gaffigan. “We can change the landscape of research by putting the elder in the center, giving an even deeper meaning to the term, applied research.”