by Rebecca Berman, PhD. and Rachel Lessem, PhD.
Incorporating the ‘patient voice’ into research processes is championed as a way to improve the value of research, promote patient-centered results, and, ultimately, change the way research is done. This belief underlies a trend towards encouraging, if not requiring, researchers to ask patients, caregivers, and other stakeholders to weigh in on health care research decisions during any or all phases of the research process.
Our research program
CJE SeniorLife successfully developed research advisory boards made up of older adults who receive long term services and supports (LTSS), funded by awards from the Patient Centered Outcomes Research Institute (PCORI) ®.[i] Under the leadership of Amy Eisenstein, PhD.,[ii] the initial project[iii] established the Bureau of Sages in CJE’s skilled nursing facility and a Virtual Bureau with older adults at home, through a platform provided by the Self Help Virtual Senior Center. These groups serve as positive examples for including the voice of older adults in research (see Figure 1).
As part of their research training, each Bureau came up with an idea for a study (Figure 2).
Designing processes for involving older adults in research
Sages in Every Setting[iv] translated the advisory board development process into other settings by supporting partners at Miami University of Ohio and LeadingAge LTSS Center @UMass Boston, who worked with two providers to create the Vancrest Research Advisory Board in rural Ohio as well as the Jewish Home of Eastern Pennsylvania Bureau of Sages. We expanded the Virtual Bureau to include NYC members, and collaborated with Northwestern University to create a board of persons with dementia. These efforts were successful in part because provider partners held values that align with a patient-centered research and were able to identify staff or volunteers who were committed to engaging older adults as research advisors. Sharing examples and resources from the original advisory boards helped them recruit and motivate older adults to share their expertise with researchers (see Figure 3)!
Figure 3: Process of involving older adults in patient-centered research
Yet academic partners have found that many LTSS providers do not have the capacity to develop and host such an older adult advisory group, even when provided with a stipend. Barriers range from frequent turnover in administration or management to routine challenges in the workflow of the organization. In addition, older adult board members expect that researchers will come to them on a regular basis to seek input and are disappointed if that does not happen or become skeptical that their input will actually change how research is done.
Our strategies for addressing challenges in establishing an advisory board
Identifying and preparing a pool of researchers who are ready to seek input from an advisory board has been a significant barrier and time-consuming process that has implications for the sustainability of advisory boards made up of persons who rely on others for support or care. We have learned that some researchers tend to reframe “advice” as “data.” We explain that researchers do not need to have IRB approval in order to seek advice from an advisory board, but we have had to establish boundaries for what types of information can be sought from board members. On more than one occasion, we have had to explain that the Bureau of Sages cannot be used as a focus group, that members cannot be surveyed, or that conducting qualitative interviews is not the same as listening to what older adults have to say about the interview questions themselves. To address these challenges, we provided virtual seminars to enhance researchers’ knowledge about how to engage older adults in the research process.
Patience, trust, mutual respect, equal voice and flexibility are critical ingredients for productive dialogue with board members. When researchers are dealing with deadlines and expectations for funding and publication, it can be difficult to patiently seek timely input from advisory boards. Expanding the pool of willing and able researchers is critical for the sustainability of these advisory boards. Changing the belief systems and mindsets of researchers regarding seeking research advice from older adults also requires building systems that reward them for doing so. Institutional review processes, funding requirements, institutional support, and academic priorities for training new researchers need to be structured so as to foster conditions that encourage researchers to come to the table.
Rebecca L. H. Berman and Rachel Lessem are Senior Co-Investigators at CJE SeniorLife, Leonard Schanfield Research Institute.
[i] The views presented in this blog entry are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.
[ii] Amy Eisenstein was the Project Lead for the Bureau of Sages and Sages in Every Setting projects, and the former Director of the Leonard Schanfield Research Institute at CJE.
[iii] The Bureau of Sages project was funded through a Patient Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (7206-CJE).
[iv] The Sages in Every Setting project was funded through a Patient Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (2640-CJE).