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Patient, caregiver and clinician views on engagement in comparative effectiveness research
Laura P Forsythe1, Lori B Frank1, Thomas A Workman2
1Patient-Centered Outcomes Research Institute, 1828 L Street NW, Suite 900, Washington, DC 20036, USA.
Aim:
Describe patient, caregiver and clinician views toward engagement as partners in health research.
Materials & 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.
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