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What’s stopping patients from publishing?


  • A survey of 112 medical journal editors-in-chief found that most supported co-authorship by patients.
  • The biomedical research industry needs policies to support ethical patient authorship and encourage greater patient participation.

A recent study led by Dr Kelly Cobey found that journal editors broadly support the inclusion of patients as co-authors on scientific publications. 

In a cross-sectional survey of 112 medical journal editors-in-chief, 69% considered patient authorship to be acceptable, with most respondents (74%) indicating that patients should not need an academic affiliation to participate as co-authors. A commonly held opinion among the respondents was that as long as patients met International Committee of Medical Journal Editors (ICMJE) criteria, they should not be excluded from authorship. The study also highlighted the value of patients’ contributions as being critical to biomedical research, with authorship potentially serving as an equitable way to acknowledge those efforts.

Those not in favour of including patients as co-authors highlighted several concerns:

  • patient co-authors’ lack of scientific training
  • patient co-authors’ unfamiliarity with publication processes and ethical scientific publishing
  • the possibility of introducing bias into a study by including patient co-authors.

Some of these could be addressed by journal policies clearly outlining standards for patient co-authorship, which would also remove some barriers to patient involvement. While just over one-third of respondents supported updating the ICMJE criteria to be more inclusive of patient partners, an equal proportion did not think the ICMJE criteria required changing, with the remainder unsure whether a change was needed. Nonetheless, a theme emerging from the survey responses was that further clarity in the ICMJE criteria would benefit patient participation.

Updating the ICMJE criteria would “…improve editors’ and authors’ confidence to include patients in research”.

Other researchers and patient involvement advocates have echoed the conclusions of the study, indicating that these efforts would help to improve equity, diversity and inclusion in medical publishing. While the study demonstrates a willingness from journal editors for patients to be authors on scientific publications, it also highlights that there are still barriers to overcome to make this commonplace.


Do you think patients should be included as co-authors?

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