Over the past several years, an innovative project called the Bureau of Sages has involved older adults, including many who are functionally or cognitively limited, as active participants in designing academic, clinical and provider research projects concerning older adult services.
There is a lot to be learned, not just about how to best involve the older adult participants (dubbed sages) in such research, but also about what research the sages wanted and thought was needed. More fundamentally, there is much to learn about how researchers, clinicians, and aging services providers can most effectively communicate with and engage older adults.
Now nearly halfway into a second phase of the project, which is largely designed to expand, institutionalize, and disseminate the Bureau of Sages model, it is also becoming apparent that challenges will have to be overcome to achieve widespread adoption of the idea.
Robyn Stone, LeadingAge’s senior vice president of research, says the project has demonstrated just how much might be falling through the cracks in interactions between older adults and researchers, clinicians and aging services providers.
“I asked a senior participant in the Bureau of Sages to tell me a story about a recent health-related experience that she viewed positively,” Stone says. “But my partner’s story didn’t involve an accurate diagnosis or a good test result. Instead, she described one of the few physicians who had ever taken her seriously and actually listened to what she had to say. As other pairs of Bureau members shared their researcher-senior exchanges, it turned out there was a common theme: Older adults in the room were concerned with very real, day-to-day issues like how they function in the world, how they can get where they need to go, and how they can do what they want to do. But none of the sages felt that clinicians and researchers were focusing on those issues. They felt we’re focusing on identifying and treating illness, when they want more non-pharmacological strategies for relieving pain. They also felt we emphasize their deficits, whereas they’d like to make the most of their strengths.”
Launching the Bureau of Sages
The program’s first phase, funded through a Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI), started in March 2016 when Amy Eisenstein, director of CJE SeniorLife’s Leonard Schanfield Research Institute, launched the research initiative at the Chicago campus of CJE SeniorLife. It led to a group of 18 individuals working together for 2 years to find ways to help researchers and clinicians listen to the voices of older adults and incorporate those voices into their work.
The sessions included a variety of interactions between researchers and older adults. “We would interview them and they would interview us,” Stone says. “We did mock presentations of research ideas we were working on and got their critiques as to what made sense and what was missing the mark, and what issues were of concern to them. We also did a lot of work with nomenclature and language to ensure that they understood what we were saying.”
“Older adults in the room were concerned with very real, day-to-day issues like how they function in the world, how they can get where they need to go, and how they can do what they want to do. But none of the sages felt that clinicians and researchers were focusing on those issues.”
Save for some researchers with extensive experience dealing with older adult populations, many researchers have great difficulty interacting with older adults and actually must overcome professional biases against the type of personal interaction that can be helpful in communicating successfully with that population, Stone says. “The traditional framework is that research is independent and you are not supposed to touch the subject because you will contaminate research, though that is changing. Other factors include that it takes a lot of effort to slow down and present things in a way that a person with limitations can understand and, also, that it is emotionally hard to spend time interacting with those in decline. One older adult participant in our group, for example, took a long time to say a single word.”
Some sages clearly indicated that some researcher efforts fell short of the mark. “Offering feedback to PCORI regarding their video offered us the opportunity to point out flaws on the video and, possibly, the thinking processes of those who produced it,” says sage Sherri Persin in a videotaped interview. “Though clearly the speakers came across as caring, committed and enthusiastic, the producers did not take into consideration that older people need videos with slower transitions, clear and well-pronounced language, no background music, and the use of large text that remains visible long enough to be read.”
“Since the video was filmed, Sherri has passed away,” Eisenstein says. “However, the candid feedback she provided to PCORI and other researchers will continue to improve research moving forward.”
“The advice and feedback from the Bureau of Sages is invaluable to researchers,” says another Northwestern University researcher, Margaret Danilovich, in a statement of support used to seek PCORI’s support for the Sages in Every Setting research phase. “This opportunity is unlike any other experience I have had as a researcher by allowing me to share my ideas with the patient population I will be working with to get feedback in the formative stage. My time with the Bureau positively influenced the selection of measurement outcomes for my research study. Bureau members identified important concepts to assess, that I had not considered. Further, during our time together, Bureau members helped problem-solve solutions to strengthen a weaker aspect of my grant proposal.”
The Bureau of Sages aspires to a set of core values to guide its work. These values can provide a valuable roadmap for research and clinician efforts to communicate with and involve older adults, says LeadingAge’s Senior Vice President of Research Robyn Stone, who participated in the Bureau of Sages’ initial phase. The 6 core values include:
1. Speaking Our Language: Using communication strategies that enable older adults to understand researchers and other professionals.
2. Listening: Fostering the art of listening so that older adults “feel heard.”
3. Compassion: Taking the time to feel or empathize with what older adults feel.
4. Mutual Understanding and Respect: Actively reaching out to understand each other in respectful ways.
5. Sharing Perspectives Through Open Dialogue: Fostering conversations that result in a meeting of the minds through the sharing of diverse views and concerns from all participants in the Bureau.
6. Unity through Teamwork: Working together as patients and professionals to achieve shared goals and outcomes.
Spreading the Model
The new Bureau of Sages research phase, titled Sages in Every Setting, began in January and will last 2 years. Its purpose is to expand and disseminate the Bureau of Sages model. Supported by another contract from PCORI to CJE SeniorLife, with a subcontract to the LeadingAge LTSS Center @UMass Boston, the project’s objectives include training researchers to engage with older adults, finding new sites for additional bureaus, and targeting health-related outcomes that older adults want clinicians to strive for and researchers to measure. One goal is to expand the model to support at least 4 new bureaus, 2 local academic communities, and one national academic community.
Sages in Every Setting is offering a series of 4 webinars to help address engaging older adults in research and use of the Bureau of Sages model. The first 2 webinars, offered in June and August, discussed the benefits for researchers of engaging older adults, and constructive ways to address common challenges to engagement. The third session will discuss how researchers can use a Bureau of Sages model to do so, including how the model can be adjusted to different settings. Registration for the third session, scheduled for October 10, is also available on the website.
Much of the webinars’ emphasis is outreach to researchers to persuade them that the Bureau of Sages approach is worth their while, says Erin McGaffigan, a research and policy fellow at the LTSS Center who is organizing the webinars. “In the first … phase it was difficult to find researchers to come [to] present to and talk with the sages,” McGaffigan says. “There is a small group of researchers that will do this because they think it is the right way to do it or to be helpful. But the webinar hopes to broaden the number of researchers that deploy engagement strategies by demonstrating how engagement can actually improve their research.”
More than 30 individuals, mainly researchers, attended each of the first 2 webinars, including individuals from numerous states and the District of Columbia, McGaffigan says.
Eisenstein says some Sages in Every Setting participants are already working to implement lessons learned through the program—including an investigator at Northwestern University who is applying knowledge gained to make emergency departments more dementia-friendly.
Still, Eisenstein says one challenge in expanding the Bureau of Sages model is that there is a high turnover rate among seniors and [community] staff, creating a need to constantly retrain.
The group is also working to formalize best practices in this area. In October, CJE SeniorLife will issue a set of guidelines, or readiness criteria, for organizations that are working to implement research engagement programs similar to the Bureau of Sages into their communities.
David Tobenkin is a freelance journalist based in the greater Washington, D.C. area.