People with lived experience sometimes work alongside academics to co-author academic papers. This is a hugely valuable contribution, but there is sometimes unfairness at the root of it. On occasions, academics write for money, while experts by experience are expected to write for nothing.
Read about broader issues involved in co-authoring academic papers here, and see this explanation of the inequality that is sometimes evident that was sent to the International Committee of Medical Journal Editors in September 2018.
In response, the ICMJE refer readers to their Recommendations that were updated in December 2018. The secretary also wrote to explain that, while they supported the principle that Patient and Public authors should be free of such discrimination, they were unwilling to single out this group of authors or this potential conflict of interest for special attention. Here’s the relevant section of the message.
Your note and suggestions were discussed by the ICMJE. The group did not add an additional discussion of patient payments, writing and authorship / involvement to its Recommendations document. This is not because we do not agree with what is noted.
Rather, we believe that such payments for work performed here are like any other and are clearly covered in our statements regarding conflict of interest declarations.
Singling out any one group (patients, graduate students, etc.) might actually be problematic as it might suggest the statements do not apply to a group that is not specifically noted.
Further, anyone (including patients) who meet all the criteria for authorship should be provided the option / opportunity to be so. Our document says so, and you should point to that if others think patients who meet all 4 criteria should not be authors.
In short, we believe that our statements apply to patients just as they do to anyone involved in a study and its reporting.Personal communication from the Secretary of the ICMJE, December 2018
So we may conclude that academics and academic institutions should not expect Public Contributors to write for nothing, but should acknowledge their contribution in the same way as they do for other stages of research production. This webpage has been set up so that it can be cited when there is a need for clarity on the matter.