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 stay-at-home older adults, people who were typically not consulted during projects.
Eisenstein, director of the Leonard Schanfield Research Institute, tried to do exactly that at the Chicago campus of CJE’s Lieberman Center for Health and Rehabilitation. 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.
Now the LeadingAge LTSS Center @UMass Boston will help CJE spread the Bureau of Sages concept across the country in a new two-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, not saved for instances that are few and far between. The original Bureau of Sages stakeholders, along with an advisory board that includes the LTSS Center, will identify specific elements that make the bureau successful, and what is needed to help the model achieve its goals in all communities.
The new Sages in Every Setting project will also target a national community of stay-at-home older adults who use technology and groups of persons newly diagnosed with Alzheimer’s disease. It will expand the model to support at least four new bureaus, two local academic communities and one 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).
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 – seven Lieberman Center residents, five older adults living at home and participating in CJE’s Virtual Senior Center, along with six clinicians and researchers.
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. 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 dissemination of toolkits, orientation information, recruitment tips and 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 would go to access resources, technical assistance and ways to contact each other.
The new Sages in Every Setting program is funded through a Patient-Centered Outcomes Research Institute Eugene Washington PCORI Engagement Award (7206-CJE).
“The LTSS Center and our academic colleagues have the opportunity to be a part of something big,” said McGaffigan. “We can change the landscape of research by putting the elder in the center, giving an even deeper meaning to the term, applied research.”