Patients are increasingly involved as authors of medical publications and as reviewers of plain language summaries of journal articles. The lived experience of patients can lead to meaningful and relevant contributions to publications, and their involvement has the potential to strengthen partnerships between patients, healthcare professionals (HCPs), researchers and the pharmaceutical industry.
What the guidance says
As the number of patient-authored publications has increased over recent years, there has been growing discussion around the reimbursement of their role as authors and/or reviewers. Good Publication Practice (GPP) 2022 now provides guidance on how patients can be involved as publication steering committee (SC) members and how they can fulfil authorship criteria.1 GPP 2022 also provides guidance on patient reimbursement and,of note, does not prohibit patients from being compensated for time spent on publication activities, specifying that:
“Author agreements may state that authors will not receive payment in exchange for listing their name on a publication byline … nor should such a statement be interpreted as a prohibition for compensating patients or other participants in publication activities, such as patient advocates or SC members, for their time.”
This statement is intentionally vague to allow pharma companies to implement their own policies on reimbursement. Consequently, discussions at the recent European and Annual meetings of the International Society for Medical Publication Professionals indicated a range of views within the industry on patient reimbursement.
The industry position so far
Some pharma companies reimburse patients for all activities, inclusive of their time as patient authors. Other companies, however, have decided to treat patient authors as they do HCPs and do not reimburse publication authorship. Others are still undecided!
Reimbursement at fair market value for time spent on publication development is not prohibited by GPP 20221 and could be seen as a case of, ‘why shouldn’t we?’. Authorship responsibilities take time out of a patient’s day, a day that may already involve healthcare visits and treatments on top of professional and/or personal responsibilities. Whereas HCPs gain professional benefit from involvement as publication authors (e.g. through an impact on grant applications) and may be able to use their (paid) working time to draft and review publications, patients often derive limited direct benefit from their authorship responsibilities.
Despite these arguments, for compliance reasons or to treat patient authors on a level playing field to HCP authors, some companies choose to not reimburse patient authorship. There may also be relevant regional or local considerations to be taken into account.
Important guiding principles
Although there is no current consensus across pharma companies on reimbursement, it is important to have standardized processes or guidance in place when working with patient authors. Communications with patients should be clear and understandable, such as plain language versions of/guides for: authorship agreements, contracts, reimbursement and disclosure of financial payments.
Finally, when offering reimbursement for authorship or review of publications, it cannot be assumed that a patient will want to take payment – they may request a contribution to a charity or prefer to accept payment as vouchers. Reimbursement payments could affect eligibility for benefits. The key is always to ask patients for their preference!
- DeTora LM et al. Good Publication Practice (GPP) guidelines for company-sponsored biomedical research: 2022 update. Ann Intern Med 2022;175:1298–304. doi:10.7326/M22-1460.
Sarah Griffiths is a Communications Director at Oxford PharmaGenesis and Lead of the Patient Engagement Team. She develops accessible language document types, presenting on them at societies and congresses. She serves on the Future Science Group Advisory Panel for standalone plain language summary publications.