Patient Involvement in Publications of Industry-Sponsored Research: Cross-Sectional Survey

<div><b>Objective</b></div><div>Patient involvement in industry-sponsored research is being encouraged. Our objective was to conduct the first international survey of industry and agency staff to investigate the extent and type of patient involvement in publications of industry-sponsored research, as well as the perceived barriers and opportunities.</div><div><b>Research design and methods</b></div><div>A cross-sectional survey was conducted (29/12/2017–10/01/2018) using an 8-item online questionnaire. Pilot testing was conducted to validate survey functionality and estimate response time. The survey, which could be completed anonymously, was distributed via a secure email link to:</div><div>(1) industry-sponsor staff (eg, medical affairs, patient partnerships, publications) who had expressed an interest in patient involvement in publications and (2) agency staff (eg, publication planners, medical writers) who have or may work on patient-authored publications. One email reminder was provided. No incentives for completion were offered.</div><div><b>Results</b></div><div>Response rates were 31% (12/39) for industry and 47% (174/373) for agency staff. Collectively, although 70.4% (131/186) of responders had experienced/observed patients being thanked for participation in a published study, only 5.4% (10/186) had experienced/observed patients as authors on industry-sponsored publications. The most frequently cited main barrier limiting patient involvement in publications was ‘It is rarely or never considered an option’ (114/186; 61.3%) and the most frequently cited main opportunity to enhance patient involvement in publications was ‘Lay (plain language) summaries’ (103/186; 55.4%).</div><div><b>Conclusions</b></div><div>This international survey of industry and agency staff with an interest in patient publications indicates that patient involvement in publications is limited. These survey results could be used to develop a roadmap, co-created with patient leaders, journal editors, industry sponsors and publication professionals, to guide patient involvement in publications of industry-sponsored research.