Photo: Bryan Goodchild
Sonal Singh, MD, MPH, associate professor of family medicine & community health and medicine in the Division of Health Systems Science, is leading a two-year engagement project on patient-centered comparative effectiveness research for patients and caregivers of people living with dementia.
The project, supported by a $300,000 award from the Patient-Centered Outcomes Research Institute (PCORI), will assemble a 20-member panel of patients, caregivers, clinicians, nurses, healthcare insurers and organizations. The aim is to develop resources and create assessments that address dementia patient outcomes such as symptom burden, functional independence, caregiver distress, social isolation and medication management challenges.
“This project is focused on prioritizing the needs of patients with dementia and their caregivers to build capacity to conduct patient-centered research, in particular comparative effectiveness research,” Dr. Singh said. “This is about what matters to dementia patients and their caregivers, what types of studies they prefer to participate in and the outcomes that are most important to them. We will then use those interests to design resources in preparation for future studies.”
Among the resources the panel aims to develop are open-access engagement tools, including a handbook for dementia-friendly engagement methods and practical facilitation techniques and a patient-caregiver educational aid, to include in UMass Chan’s eScholarship digital repository and integrate them across research networks nationally.
“We feel very positive about this project because it provides the opportunity to bring patients and caregivers along this journey and build a meaningful partnership that meets the project goals and the team is ready to lead patient centered comparative effectiveness research,” Singh said. “As a clinician who sees patients with dementia, I want to engage patients and their caregivers in the research. At the end of the project, we hope we won’t just have researchers, but we will have patients and caregivers who can serve as co-principal investigators and research leaders in the future.”
The UMass Chan project team includes Jerry H. Gurwitz, MD’83, the Dr. John Meyers Professor of Primary Care Medicine, professor of medicine and; Kathleen Mazor, EdD, professor emeritus of medicine; and Brian Silver, MD, the Endowed Chair in Neuroscience Research and professor of neurology. The team is working alongside Jennifer O’Rourke-Lavoie, co-creator of the PCORI/CER partnering guide; Xiaojuan Li, PhD, assistant professor of population medicine at the Harvard Pilgrim Health Care Institute; Liz McCarthy, regional director health systems at the Alzheimer’s Association of Massachusetts and New Hampshire; and other advocates and policy makers from Humana Healthcare Research, Reagan Udall Foundation for the FDA and pharmaceutical companies.
