Does the ICMJE guideline for authorship need revising to support and recognize patient partnership? A cross-sectional survey of journal editor-in chief

Objectives: To measure medical journal Editor-in-Chiefs’ perceptions regarding including patients as (co-)authors on research publications and to measure their views on the application of the ICMJE authorship criteria to patient partners.Design: Cross-sectional survey co-developed with a patient partner Participants: Editor-in-Chiefs of medical journals were identified via a random sample of journals obtained from the Scopus source list, which contains all MEDLINE and EMBASE content. We restricted the Scopus source list to journals with a classification code of ‘Medicine’ and that were listed as active. Editor-in-Chiefs contact names and contact details were manually extracted from journal websites or obtained via online searching. Main outcome measures: The key outcome measures were whether Editor-in-Chiefs believed: 1) patient partners should be (co-)authors and; 2) whether they felt the ICMJE criteria for authorship required modification for use with patient partners. We also measured Editor-in-Chiefs description of how their journal’s operations incorporate patient partner perspectives. Results: 112 Editor-in-Chiefs responded to our survey (18.7% response rate; 66.69% male). Participants were able to skip any questions they did not want to answer, so there is missing data for some items. 69.2% (N = 74) of Editor-in-Chiefs indicated it was acceptable for patient partners to be authors or co-authors on published biomedical research articles, with the remaining 30.8% (N = 33) indicating this would not be appropriate. When asked specifically about the ICMJE authorship criteria, and whether this should be revised to be more inclusive of patient partners, 35.8% (N = 39) indicated it should be revised, 35.8% (N = 39) indicated it should not be revised, and 28.4% (N = 31) were unsure about a revision. Acceptability of the individual components of the ICMJE authorship criteria by Editor-in-Chiefs varied. 67.9% (N=74) of Editor-in-Chiefs felt a patient partner would likely be able to “give final approval a manuscript to be published” but only 42.6% (N = 46) of Editor-in-chiefs felt patient partners could be “accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved”. 74.1% (N = 80) of Editor-in-Chiefs did not think patients should be required to have an academic affiliation to published while 16.7% (N = 18) and 9.3% (N = 10) indicated they should or were unsure, respectively. 3.6% (N = 4) of Editor-in-Chiefs indicated their journal had a policy that specifies how patients or patient partners should be considered as authors. Conclusions: We found that a substantial proportion of medical journal Editor-in-Chiefs do not agree that patient partners should act as authors on publications, and that there is little consensus as to whether the ICMJE authorship criteria is appropriate for use with patient partners. Further, few journals involve patient or patient partners in the operations of their journal or have independent policy guidance around how authorship might apply to these groups. Access to, and awareness of, appropriate authorship criteria is an important right for patient partners to recognize contributions to research. Our findings highlight gaps that may act as barriers to patient partner participation in research.