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Adults age 65 and older represent 14% of the U.S. population, and this percentage is expected to increase to 22% by 2040; a rate that outpaces all other age cohorts.1 The numbers of institutionalized and homebound (or as some prefer to be called, stay-at-home) older adults are growing as well. Of those ages 65 and older, 3.6% live in an institutional setting, which increases to 11% among those ages 85 and older.1 Nearly 6% of the Medicare population (adults ages 65 and over) “rarely or never” leave their homes, and this population is expected to double over the next 50 years.2
Despite this rapid demographic shift, scientists continue to omit this segment of the population from research. Randomized clinical trials have historically excluded and continue to exclude older participants, inadequately representing patients and reducing generalizability of findings.3–6 A review of major medical journals found that only 5% of published studies focused on older adult populations while almost 15% unjustifiably excluded older people.5
Seeking input from study populations or patients in research is an increasingly accepted or even required practice, 7–11 and there is an emerging literature regarding frameworks and core principles,7,8 the need for best practices9 and its overall value.10,11 Examples of engagement projects with older adults have targeted the relatively healthy, chronically ill, and disabled, and often include caregivers.12–19 Two populations rarely engaged in research processes, however, are SNF residents and older adults who rarely or never leave their homes. While these individuals often have the capacity and skills to participate in the design, development and delivery of health-related research, there is no infrastructure for incorporating their voices into research.
To address this problem, the Bureau of Sages was created. The Bureau of Sages is a research advisory board made up of older adults typically excluded from research who share experiences, build knowledge, and develop skills for working together to provide voice to the direction, design, and implementation of research on aging. The concept of the Bureau of Sages emerged organically from informal discussions among residents living at the Lieberman Center for Health and Rehabilitation in Skokie, Illinois, a short- and long-term care facility for...