By Steve Syre
The LTSS Center and its partners are organizing an April 2020 event to help researchers listen to the voices of frail older adults.
The Bureau of Sages was created in Chicago with a simple goal: helping researchers listen to the voices of frail older adults and better understand the issues and problems that matter most to those elders. It was a big hit.
The idea for the bureau was originally developed by Amy Eisenstein, then-director of the Leonard Schanfield Research Institute at CJE SeniorLife, a LeadingAge member in Chicago. Eisenstein, who is now a program officer at the Retirement Research Foundation, put the bureau to an initial test at CJE’s Lieberman Center for Health and Rehabilitation. The encouraging results kicked off a series of efforts to introduce the concept to a national audience.
BRINGING RESEARCHERS AND OLDER ADULTS TOGETHER
In the latest development, the LeadingAge LTSS Center @UMass Boston will work with partners to create and host the Sages’ Symposium to Expand Research Readiness in April 2020. The event is intended to help researchers and frail older adults learn from each other and advance new ideas for research and partnership.
The work is being funded by the Patient-Centered Outcomes Research Institute (PCORI), which has supported the Bureau of Sages development from its early stages (Eugene Washington PCORI Engagement Awards, EAIN-7206).
Erin McGaffigan, an LTSS Center fellow based in Boston, is leading the project. Robyn Stone, co-director of the LTSS Center, and Verena Cimarolli, senior health services research associate in the LTSS Center’s Washington, DC, office, will serve as advisors, along with staff members at CJE SeniorLife. Older adults will also be involved in planning the April seminar and helping the team carry out post-seminar follow-up.
Seminar organizers expect 50 to 75 participants to attend the 1-day, in-person learning and networking event in the Chicago area. Researchers and older adults will talk about the impact of engaged research to date. They will also discuss and prioritize research topics and partnerships moving forward.
“CJE SeniorLife’s experiences developing the Bureau of Sages confirmed that frail elders are ready, interested, and able to participate in the research process,” said McGaffigan, founder of Collective Insight LLC in Boston. “But it’s equally important and often as challenging to create a network of researchers ready and interested in engaging frail older adults, including those with cognitive limitations, in their research.”
HOW BUREAU OF SAGES BEGAN
The original Bureau of Sages project was initiated in a skilled nursing home and a virtual senior center. Sages, a reference to individuals with “lived experience” on aging, meet in-person or virtually to share experiences and build knowledge. They also develop skills to provide a voice that can influence the direction, design, and implementation of research on aging.
CJE engages the Sages through informal monthly meetings and also holds formal quarterly retreats with project advisors, including Stone. As the Bureau of Sages model has evolved, Sages have become role models and champions for incorporating into research the voices of diverse patient populations, including the frailest residents living in care settings.
Over the past 3 years, Sages have provided input to more than 20 researchers and clinicians. Those experiences have contributed to the development of facilitator guides, training and presentation templates, and evaluation tools.
Since its inception the Bureau of Sages model also has been employed by new partners in different settings, including:
- JHEP Bureau of Sages, made up of nursing home residents who live in the Jewish Home of Eastern Pennsylvania in Scranton, PA.
EARLY EFFORTS TO EXPAND THE MODEL
Events intended to introduce the Bureau of Sages model to researchers across the country began last year. CJE partnered with the LTSS Center to design and moderate “A Valid Voice: Engaging Stakeholders in Research,” a 4-part virtual seminar series conducted last year.
The series focused on educating researchers about the benefits of engaged research, methods in which to engage older adults, and creative solutions to common challenges like engaging “hard to reach” older adult populations. Seminar participants included 71 researchers and 17 students from 24 states.
McGaffigan, Eisenstein, and Katherine Abbot of the University of Ohio, Miami also worked with the Gerontological Society of America (GSA) last year to expand interest in the kind of engaged research the Bureau of Sages encourages. They formed the Patient/Person Engagement in Research Interest Group for GSA and held an initial meeting attended by 20 researchers representing at least 12 organizations.
“We have only begun to scratch the surface in identifying, educating, and linking researchers to frail older adults to ensure meaningful engagement of the population being studied,” McGaffigan said.
Funding Acknowledgement: The Sages’ Symposium to Expand Research Readiness is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EAIN-00060).