Patients in publications – where are we now?

Sarah Griffiths

Patient engagement in medical research is a priority for the pharmaceutical industry; however, patient involvement in publications is rare. At the 14th Annual Meeting of the International Society for Medical Publication Professionals (ISMPP)  Sarah Griffiths from Oxford PharmaGenesis facilitated an informal round-table meeting to explore the views of the medical communications community regarding patient engagement in publications.

  • In principle, the idea of patient authors was welcomed, although the scope of their involvement would depend on the therapy area and the potential of the patient to add value to a publication.
  • Patient involvement was considered to be more important in the earlier stages of research, perhaps during study design and protocol development, rather than just at the publication stage.
  • Safeguards should be considered in order to avoid the potential for real or perceived patient bias, or the manipulation of patients or their influence on studies. In particular, safeguards should ensure that patients do not act as authors on reports of studies in which they participated.
  • It may be more suitable for patients to be involved as expert ‘patient reviewers’ of publications.
  • Patient reviewers should be trained.
  • Patient reviewers should not be directly involved in the study.
  • Participants in the round-table meeting were not aware of any patients who had been asked to review manuscripts.
  • Patient authors would need to understand the publishing process and should be treated in the same way as healthcare practitioners when authoring papers (e.g. they should not be paid for authorship).
  • Patients should act as reviewers for lay summaries (e.g. the European Medicines Agency Policy 0070 study summary and the plain language summary of a peer-reviewed publication).
  • The patients’ perspectives of their therapy area are valuable, but few manuscripts with patient authors are published. This may be due to the opinions of journal editors and the perception that input from patients will be of low quality.
  • Patient advocates may be the most suitable patient authors and reviewers because they could be considered to represent the views of a particular patient population.

Recommended actions

  • Guidelines are required to define the role of patient authors clearly for clinical studies.
  • The suitability of a study or a publication including a patient author should be carefully considered.
  • Patient authors and reviewers should be independent of the participants enrolled in the study.