Older adults can be powerful research partners in gerontology research, according to a new documentary by Collective Insight. “Reimagining Expertise: Engaging Older Adults as Research Partners,” created in partnership with LeadingAge LTSS Center @UMass Boston, advocates for a paradigm shift in gerontology research. The voices of adult adults, particularly those in underrepresented communities, should be included throughout the research process.

“By bringing people who have that [lived] experience to the table to talk with researchers, it broadens people’s understanding of what expertise really is,” says Erin McGaffigan, founder of Collective Insight. “It gives people a more realistic understanding of what the issues are and how to break down the questions they want to ask.”

The primary barrier to this approach is often the additional time and funding required to include more people and steps in the research process. To address this, Collective Insight has included funders in its advisory board, helping them put together requirements that include older adults as part of the process.

“By bringing people who have that [lived] experience to the table to talk with researchers, it broadens people’s understanding of what expertise really is”

Erin McGaffigan

The value of including older adults in research is not “just to be able to check a box,” says Marc Cohen in the documentary. Cohen is the co-director of the LeadingAge LTSS Center @UMass Boston, as well as a professor in the Gerontology Department. “It’s an underlying, fundamental belief that the quality of the research, from conceptualization to the dissemination of results, will improve if it’s been informed all along the way by the people who are the targets of the research. We can take into account their lived experience.”

As an example of engaging older adults as research partners, the documentary included comments from Taylor Gray, a PhD candidate at University of Massachusetts Boston’s Gerontology Department. As part of his research into the effects of driving cessation on older adults, Gray led an older adult subcommittee that included the voices of older adults. In the documentary, Gray says he believes that engaged research should continue throughout a research project, and he highlighted the particular importance of including this input in the early stages. This ensures that the researchers know, early on, whether they’re asking the right questions.

“Engaged research can help you focus a topic to be something that’s going to make a difference,” Gray says.

Additionally, sharing results with these research partners at the end of the project allows them to see how their participation affected the project and its conclusions. When people see the value of their contributions and understand that their voices were heard, Cohen says that they may be more likely to participate in engaged research again – and possibly be more likely to engage with the healthcare system as well.

According to McGaffigan, engaged research is especially important in underserved communities. Including the voices of those who have not been fairly represented in research creates more accurate, meaningful research that can help address and overcome disparities. The documentary highlights the work of the Healthier Black Elders Center, a community engagement center located at Wayne State University. This group connects older Black adults who are willing participate in research with researchers who need their input. In addition, the group shares research best practices with universities and healthcare providers.

“If researchers … convey that fire and that sense of adventure that we’re working together to find stuff out, then—you know what?—it’s going to help people,” says Wilma Stringer, an HBEC community advisory board member of the center. “It’s going to improve lives. It’s going to make people healthier, stronger, more knowledgeable. It’s going to increase agency. You bring that to your participants, and you have true research partners.”

Watch the documentary here: