Patient, caregiver and clinician views on engagement in comparative effectiveness research

Abstract

Aim: Describe patient, caregiver and clinician views toward engagement as partners in health research. Materials and methods: Online surveys of patients and caregivers managing rare (n = 560 patients, n = 609 caregivers) or chronic conditions (n = 762 patients, n = 776 caregivers) and practicing clinicians (n = 638). Results: Over half of respondents were unfamiliar with the concept of partnering with researchers but most expressed interest in working in a research partnership. Potential facilitators endorsed were ensuring research is meaningful, applying results in an understandable way, and sharing results. Lack of time is a potential barrier. Clinicians were most interested in helping researchers decide on intervention comparisons and identifying implications for clinical practice. Conclusion: Patients, caregivers and clinicians are interested in research roles that emphasize usefulness and understandability of research.