Rochester researchers receive PCORI community engagement award

A $250,000 Patient-Centered Outcomes Research Institute (PCORI) Engagement Award to the University of Rochester’s Warner School of Education will allow University researchers to collaborate with community stakeholders to recruit and train two cohorts of older adults (age 55+) from communities in urban Rochester, N.Y. to actively participate in research projects with geriatrics health researchers. The Warner School will collaborate with the School of Nursing to use the Eugene Washington Engagement Award funds to support a new two-year training program called Engaging Older Adult Learners as Health Researchers (ENGOAL).

Over the past several years, the team of University of Rochester researchers and stakeholders for the new PCORI Engagement Award has worked in underserved communities characterized by high levels of chronic disease, lack of access to healthcare, and low health literacy. They have observed that underserved seniors are usually “subjects” in research, but rarely included as research partners. As a result, they concluded that geriatric research findings may be less meaningful to seniors and new findings and may be less useful for geriatrics practitioners.

Members of the ENGOAL team have conducted research with older adults in the Rochester community for several years. Most recently, Joyce Duckles (PhD, MA), assistant professor of human development at the Warner School, Craig Sellers (PhD, RN, AGPCNP-BC, FAANP), professor of clinical nursing and medicine/geriatrics and aging, and Sandhya Seshadri (PhD, MA, MS, CCC-SLP), clinical assistant professor, both from the School of Nursing, studied how older adults transition from the emergency department (ED) to their homes and communities.

With additional support from the Warner School’s Dean and a Provost Interdisciplinary grant, the team followed the pathways of older adults through ED discharge to their homes, interviewing participants three to four times across contexts. Participants were enthusiastic about the research process and often requested to become more involved. Inspired by training programs in Canada and the U.K., these researchers have partnered with Silvia Sörensen (PhD), associate professor of human development at Warner, who brings expertise in gerontology and community health projects, to develop ENGOAL. The team will carry out all phases of the two-year contract, which began June 1 and continues through May 2019, in collaboration with stakeholders from North East Area Development (NEAD), Beechwood Neighborhood Coalition, the Rochester Housing Authority, and the Interdenominational Health Ministry Coalition.

The goal of the program is to provide instruction to community-dwelling older adults to become educated consumers of research and partner with geriatrics researchers in developing community relevant research questions. The program will also develop participants’ health literacy, enabling them to advocate for themselves and members of their communities. Finally, the researchers hope to increase older adults’ engagement in their health care and foster their communication with health professionals. The processes of patient-research preparation and curriculum development have the potential for sustainability through replication in other university communities.

Sörensen, the project lead on ENGOAL and a nationally-recognized gerontologist with experience in teaching older adults and engaging them as researchers, says that the premise of ENGOAL is that older adults from underserved communities are the experts on their own needs and can offer a unique perspective on their communities’ values and priorities. “One of the reasons this program is so important is because of the opportunity it will present to give older adults a voice in the research world by providing them with training, supports, networks, and engagement,” says Sörensen.

Duckles, co-investigator on ENGOAL, adds, “By involving older adults in underserved communities, characterized by high levels of chronic disease and poor health outcomes, we are hoping to help individuals to become skilled co-researchers and community advisors and to achieve greater patient engagement while developing their health literacy.”

Sellers also notes that, “To our knowledge, ENGOAL is the only project of its kind currently underway in the United States.”

With the new award, the interdisciplinary research team will develop and implement a training program that will include curriculum and instruction materials that provide unique opportunities for patient partners to engage in class sessions, seminars, journaling and verbal reflections, and apprenticeship opportunities with academic researchers at the University; as well as methods of assessment, such as surveys and interview guides. In addition to the in-depth curriculum and training, a key to the program’s success will be the team’s ability to develop a model that can be replicated in other communities and contexts. Project results will be disseminated through publications, presentations at conferences, in communities and at forums on aging, and shared through a newly developed training model.

PCORI is an independent nonprofit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work. The PCORI Eugene Washington Engagement Awards support projects that encourage active integration of patients, caregivers, clinicians, and other healthcare stakeholders as integral members of the patient-centered outcomes research/clinical effectiveness research (PCOR/CER) enterprise. For more information about PCORI’s funding to support engagement efforts, visit: http://www.pcori.org/.