Engaging patients in health care epidemiology research: A case example.

BACKGROUND: We describe stakeholder engagement from a Patient-Centered Outcomes Research Institute-funded project to identify patients' research priorities for health care-associated infections (HAI). We summarize insights from these activities to highlight feasibility and benefits of stakeholder engagement in health care epidemiology research.Patients and caregivers who had an HAI experience were involved in a patient and caregiver stakeholder group. We engaged clinicians, infection prevention experts, state public health professionals, and quality improvement experts in an institutional stakeholder (IS) group in an academic tertiary care medical center.

METHODS: Through individual and combined group activities, we identified stakeholders' HAI research priorities. Existing engagement resources from the Wisconsin Network for Research Support (WINRS) guided the process.

RESULTS: Given the patients' and caregivers' experiences with HAIs, their perspectives broadened IS understanding of the impact of HAIs and the relevance of proposed research topics. After introductory activities described here, the patient and caregiver stakeholder group actively engaged with researchers and the IS group in discussing complex systems-level topics to reduce HAIs. We have sustained this engagement through continued collaboration.

CONCLUSIONS: Our engagement experience provides one example of how patients can be engaged in health care epidemiology research. Our experiences and lessons learned may be helpful to others interested in stakeholder engagement.