Health Care

Patient and caregiver engagement (PCE) in health research and more broadly in health care delivery is increasingly recognized as foundational to achieving relevant health gains and health system improvements and is important to funders. Optimal ways to foster meaningful PCE, build capacity, and evaluate its implementation and achievements in health research require further exploration. In the Aging, Community and Health Research Unit, a variety of recruitment, co-design and analysis methods were used for PCE across 4 studies that examined quality of life and care for older adults with multiple chronic conditions and their caregivers. PCE occurred within different study designs (i.e., pragmatic trials, prospective cohort, literature review), requiring common and divergent engagement approaches. Strategies included engaging partners in: patient advisory councils, community advisory boards, steering committees, panel discussions, and policy forums. Information from partners on PCE was collected by interviews, focus groups, surveys, document analysis, website stories, photographs, usability testing, feedback, think aloud, needs assessment and gap identification, and persona-scenarios. Results showed the following strategies enhanced meaningful PCE and minimized burden: a) dedicated leads to facilitate relationship building, identify assets, needs, and preferences; b) flexibility in engagement mechanisms (e.g., ability to participate in-person or virtually); c) distributive governance models that foster strategic PCE in research stages, ensures a breadth of perspectives, and limits burden; and d) contingency strategies (e.g., back-up PCE representatives). Future research is warranted to identify the best methods to enable meaningful engagement, evaluate impact, and balance the risks and benefits of PCE amongst this vulnerable population.