Patient, caregiver and clinician views on engagement in comparative effectiveness research.
OBJECTIVE
Describe patient, caregiver and clinician views toward engagement as partners in health research.


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.


CONCLUSIONS
Patients, caregivers and clinicians are interested in research roles that emphasize usefulness and understandability of research.
Patient-Centered Outcomes Research Institute, 1828 L Street NW, Suite 900, Washington, DC 20036, USA.
Laura P
LP
Forsythe
Patient-Centered Outcomes Research Institute, 1828 L Street NW, Suite 900, Washington, DC 20036, USA.
Lori B
LB
Frank
American Institutes for Research, 1025 Thomas Jefferson St NW, Suite 3290, Washington, DC 20007, USA.
Thomas A
TA
Workman
American Institutes for Research, 1025 Thomas Jefferson St NW, Suite 3290, Washington, DC 20007, USA.
Tandrea
T
Hilliard
American Institutes for Research, 1025 Thomas Jefferson St NW, Suite 3290, Washington, DC 20007, USA.
Daniel
D
Harwell
Patient-Centered Outcomes Research Institute, 1828 L Street NW, Suite 900, Washington, DC 20036, USA.
Lauren
L
Fayish
D017028:Caregivers / Q000706:statistics & numerical data*; D003256:Community Participation / Q000379:methods / Q000706:statistics & numerical data*; D057186:Comparative Effectiveness Research / Q000379:methods*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010361:Patients / Q000706:statistics & numerical data*; D010820:Physicians / Q000706:statistics & numerical data*; D011795:Surveys and Questionnaires; D014481:United States
comparative effectiveness research; stakeholder engagement; survey