This article summarizes the key themes and findings of a publication addressing the concept of patient authorship—that is, the inclusion of individuals with lived experience of a specific disease or condition as authors in peer-reviewed publications.
The publication emphasizes the growing recognition of the experiences, needs, and perspectives of patients and caregivers in medical research and therapeutic development. Patient involvement refers to an active, meaningful, and collaborative engagement between patients and researchers across all stages of the research process. At its core lies the understanding that individuals with lived experience of a condition can offer unique insights and perspectives.
“Patient involvement is a movement that promotes active, meaningful, and collaborative interaction between patients and researchers across all stages of the research process, guided by the joint contributions of patients, acknowledging their specific experiences, values, and expertise.”
Patient authorship is a relatively new concept that has emerged from the recognition of the significant contributions made by patient partners to medical research and its dissemination. Patient authors can enhance the relevance, value, and credibility of publications by validating the need for research, interpreting findings, and improving the trustworthiness of results. Moreover, caregivers and patient organizations can serve as valuable collaborators, particularly in areas like rare diseases where limited information exists.
According to the recommendations of the International Committee of Medical Journal Editors (ICMJE)—the primary ethical guideline for authorship in medical publishing—authorship should be based on the following four criteria:
- Substantial contributions to the conception or design of the work; or the acquisition, analysis, or interpretation of data;
- Drafting the work or revising it critically for important intellectual content;
- Final approval of the version to be published;
- Agreement to be accountable for all aspects of the work to ensure questions related to the accuracy or integrity of any part are appropriately investigated and resolved.
Sources indicate that individuals with lived experience can meet all four criteria and that academic credentials are not a prerequisite. Like any co-author, patient partners can make significant contributions to a publication even if they are not involved in every aspect of the research. For instance, they may provide unique insights in interpreting and communicating results.
A major barrier to the wider adoption of patient authorship is the lack of clarity around how to document their roles in manuscript preparation. Currently, there is no systematic way to identify publications with patient or caregiver authors, making the process time-consuming and uncertain. Proposed solutions include explicitly using labels like “patient author” or “public contributor,” though some individuals may prefer not to disclose personal health information publicly.
Another significant challenge is the lack of training on patient authorship. Patients and caregivers involved in research must understand their responsibilities as authors in peer-reviewed publications. This awareness enables them to make informed decisions about accepting authorship and how their contributions should be represented. Additionally, clinicians and other stakeholders should recognize that patients and caregivers can be authors and bring valuable perspectives to the publication process.
Patient authorship is a relatively recent development within the broader patient engagement movement. Collaborating with patients, caregivers, and advocacy groups can enhance the relevance and reach of medical publications. As long as they meet the authorship criteria, patients and caregivers should be eligible to be listed as authors.
Reference. Leventhal, P., Drachmann, D., & Skovlund, S. (2024). Can patients and caregivers be authors of peer-reviewed publications?. Medical Writing, 33(4).
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