Bonnie Stein Kammer went to Chicago for Passover in 2012 and never left. Emergency heart surgery turned her from a holiday houseguest into a permanent resident; she decided she would receive better ongoing care while living with her daughter, a physician, than if she returned to her home in Wisconsin.
But with her heart problem and difficulty walking, Stein Kammer found herself mainly confined to her new home. She quickly found online classes to occupy her time. During one course, she learned about an opportunity to become a partner on a PCORI-funded project that connected older adults with researchers to advise on studies.
The project, with support from a Eugene Washington PCORI Engagement Award, has built an advisory bureau of residents in skilled nursing facilities and older adults who live at home.
Too often, these groups are left out of discussions about the very research that aims to meet their needs. The project team wanted to bring those older adult voices into comparative effectiveness research to help shape study protocols and outcomes, ultimately improving older adults’ care.
“When I spoke with the medical researchers who came to talk with our group, it amazed me that it was a new experience for them to listen to seniors,” Stein Kammer says. “In the PCORI project, seniors are being asked what we think, and we are being heard.”
Stein Kammer is no stranger to working to change the status quo. Now 85, she was one of only two women in her law school class at the University of Wisconsin in the early 1950s. She raised five children and became a real estate attorney at a time when few women had professional careers.
Growing but Underrepresented
About one in every seven Americans is 65 or older, and this group is growing quickly. By 2060, the Department of Health and Human Services estimates there will be 98 million older adults, nearly double today’s figure. But few participate in health research.
Many studies exclude people who are homebound or live in nursing facilities. Other studies won’t allow people over a certain age—often 65—to participate, says PCORI project lead Amy Eisenstein, MA, PhD. Even studies that focus on older adults often leave out people who take multiple medications or have more than one chronic condition, as much of the older adult population does. As a result, these studies don’t accurately reflect the older adult population and are unlikely to produce findings that help the very people they intend to serve, she says.
When Eisenstein became Director for Research at CJE SeniorLife in Chicago, in 2015, residents at its skilled nursing residential community told her they saw a need for research in nursing homes. The conversations sparked the idea for forming a research advisory board, which became known as the Bureau of Sages.
One of the youngest participants in the bureau, Mary Ana Nemenski, is 64. She moved into the Lieberman Center for Health and Rehabilitation five years ago, after having two strokes. A former medical transcriptionist, she can move only her left hand and head. The bureau gave her an opportunity to use her voice to improve the lives of others in skilled nursing facilities.
She recalls a conversation leading to the idea that nursing home staff should better understand residents’ experiences. The staff, Nemenski says, “should have to live like residents for a day, having to use a call light to get help for things like using the bathroom, or receiving medication from a nurse who just sets your pills down without a smile. A smile when your nurse brings your medicine means the world. It’s one thing to tell somebody about all of this, but it’s a different one to live it.”
The idea that staff could learn by living like residents impressed two Northwestern University researchers, who have submitted a proposal to perform research on it. The researchers want to work with the bureau to develop a training curriculum for nursing staff and then try it out at Lieberman. The team proposes to measure the nursing staff’s empathy, job satisfaction, and self-confidence before and after using the curriculum. The team would also measure nurse-patient interaction, residents’ pain management and quality of life, and nursing home culture.
Bureau participants either live at the residential community, the Lieberman Center for Health and Rehabilitation, or are members of a virtual senior center, which provides web-based classes, social opportunities, and other events for stay-at-home older adults. Stein Kammer participates in a program of this kind.
The Engagement Award’s first year educated and trained the project’s bureau members. Participants learned about basic research concepts, patient-centered outcomes research, comparative effectiveness research, and ways to meaningfully contribute to research.
In year two of the project, the bureau engaged 17 researchers and provided them with recommendations on prioritizing research topics, improving interview questions, and accommodating seniors’ needs.
Rush University’s Laurin Mack, PhD, and a colleague, Sylvie Rosenkalt, BA, from Howard Brown Health, in Chicago, presented one such proposal to the bureau. The two plan to study a health ambassador program, which is part of a larger program that educates providers, patients, and their families about geriatric health.
Mack and Rosenkalt told the bureau about a yearlong educational program for older adults and family members, involving in-person meetings at health centers. Participants would also complete online educational modules.
Mack, Rosenkalt, and their colleagues wanted to study whether the program would increase participants’ knowledge about aging and affect health outcomes. After hearing from the bureau’s older adults, the team changed the way they thought about program delivery.
Bureau members said a year was too long for older adults to maintain attendance. They also told the researchers that commuting to meetings outside of their community would make participation difficult. “It was so helpful to talk with people who would be our program’s consumers,” Mack says.
The input “gave us confidence in our ideas, constructive feedback, and direction on how to improve the ideas that weren't as well suited to older adults," she says. The researchers shortened the program to two in-person sessions and considered program sites that might be more convenient to participants, such as assisted living facilities and long-term care communities.
Building More Bureaus
Eisenstein and her team plan to build on their success by organizing additional advisory groups using a second PCORI Engagement Award. The team is talking about creating research advisory groups with staff from around 10 long-term care facilities and other settings. The team is also working with the Gerontological Society of America to form an interest group of researchers who want to integrate older adult patients’ feedback into research. The interest group will work toward implementing bureaus in diverse settings.
The Bureau of Sages is a great example of real people—older adults who may be very frail, have limited mobility, or have some level of cognitive impairment—having the opportunity to participate and help shape research.
Robyn Stone, DrPH, Senior Vice President for Research at LeadingAge, a national association of aging services providers, who has participated in both PCORI-funded projects, strongly supports making advisory bureaus of older adults sustainable.
“The Bureau of Sages is a great example of real people—older adults who may be very frail, have limited mobility, or have some level of cognitive impairment—having the opportunity to participate and help shape research,” she says.
Stone and colleagues from the University of Massachusetts Boston are now working to share the voice of nursing home residents with researchers across the country as part of the second, broader PCORI Engagement Award. “The Bureau of Sages concept has the potential to transform both the research questions we ask and the process itself,” she says.
Eisenstein agrees that the bureau in Chicago is just the beginning. The idea, she says, has the potential to make research much more relevant for older adults and make a difference in the lives of older people nationwide.
PCORI recognizes the importance of patient-centered research on older adults’ health, so it has supported around $160 million in projects aimed at helping older adults make better-informed decisions about the healthcare choices they face.
Including the project at CJE SeniorLife, PCORI has funded seven Engagement Awards totaling more than $1.73 million to advance patient-centered comparative clinical effectiveness research for older adults. One project is training older adults from underserved minority groups to engage in patient-centered research. Another is building stakeholder relationships for conducting research about human immunodeficiency virus (HIV) and aging in Coachella Valley, California, where a large number of HIV-positive gay men over age 50 live.
PCORI has also funded 30 research studies that focus on the older adult population, totaling more than $158 million. These include a study comparing usual care with an intervention to link chronically ill older adults who have visited the emergency room with community-based social and medical support. Another study tests two types of group exercise programs to see which better improves older adults’ walking ability. This study has results: it found that older adults who performed timing and coordination exercises while standing experienced greater improvement in their walking ability than those who participated in a seated exercise program.
For more information about PCORI’s funded research on older adults’ health, see our fact sheet.
Posted: September 4, 2018