Re-examining the role of patient partners during the pandemic
Jul 31, 2020
Photo above: Rebecca Ganann
How has patient partnership in health research changed due to COVID-19? This was the topic of a webinar hosted by Ontario's Strategy for Patient Oriented Research SUPPORT Unit (OSSU) on July 9, 2020.
Dr. Rebecca Ganann, assistant professor in the McMaster School of Nursing and specialist in patient partnership in research, was part of the panel discussion.
“Patient partnership in research is important,” says Ganann. “And even more so in the time of COVID-19.”
However, safety concerns have made typical in-person meetings between patients, family caregivers and researchers impossible. Short timelines for funding calls, rapid set-up of new research teams, and quick health system decision-making have further complicated the situation.
“It has left some patient/caregiver partners feeling left out. Despite these challenges, researchers need to ensure that patient partners are involved in the grant development process, as well as how research programs are adapting to the COVID-19 context,” says Ganann.
Some studies have more successfully engaged patient/caregiver partners in COVID-related changes. For example, Ganann is a co-investigator on a grant submission led by Dr. Maureen Markle-Reid involving a hospital-to-home intervention to support stroke patients. In previous studies, the intervention team met with patients and their caregivers in person. With the new submission, the interdisciplinary team will provide virtual care to support patients and their families by phone or video calls. Drs. Kathryn Fisher, Jenny Ploeg, and PhD student Carly Whitmore are also co-investigators on this study in the Aging, Community and Health Research Unit.
Even though the method of delivery has changed, “it’s still important to continue including our patient partners’ experiences. Their input will help to inform what works and what needs to improve based on their post-stroke care experiences,” says Ganann.
Ganann is also leading a study that will co-design and test a program to promote mobility and community connections among older adults. The EMBOLDEN research team is working together with its Strategic Guiding Council, comprised of older adults, as well as health and social service providers. Together this group is re-envisioning the design of this program, in the context of COVID, and planning how it may work for older adults in the future. “We need to understand the impacts of COVID-19 on older adults living in the community and how to keep them safe, yet moving and connected during the pandemic,” says Ganann.