Background Patient advocates are increasingly authoring peer-reviewed publications that could enhance patient care and understanding of the lived experience. Although patient authorship may be seen as an innovation in the peer-reviewed publication environment and some may not be aware of or accept patient authorship, we know patient-authored publications exist. However, identifying patient-authored publications is often challenging and time-consuming. Main body In this commentary, we propose a definition for a patient author and patient-authored publications. We outline factors driving the increase in patient authorship, including patient interest, recognition of the value of including the patient voice and major funders recognising the importance of involving patient advocates in research. Evidence and experience-based guidance on patient authorship is emerging, and we highlight practical guidance for patient advocates on authoring peer-reviewed publications. To gain a better understanding of patient authorship, an efficient method is needed to identify patient-authored publications. A dataset on patient-authored publications could be used for a range of quantitative and qualitative research studies. The affiliation search function in PubMed can provide an easy, and reproducible way to identify a dataset of patient-authored publications in the international peer-reviewed literature, but only if patient authors include a standard metatag, (e.g. Patient Author) as one of their listed affiliations, combined with other affiliations as appropriate. From 2020 to 2021, there was a nine-fold increase in patient-authored publications in PubMed identified using the Patient Author tag. We recognize that terminology can be contentious and some authors may prefer alternative metatags. Further efforts are required to gain consensus on a suitable, standard metatag or set of metatags to use to show the true extent of patient authorship. Conclusion Patient authorship is not only legitimate, but it also exemplifies the principles of diversity, equity and inclusion. Stakeholders in the publication community need to review their policies and procedures to identify and address barriers to patient authorship. Patient advocates, funders, researchers and publishers could all help to promote awareness and acceptance of patient authorship and the merits of using a standard metatag or set of metatags, so that patient-authored publications are no longer hidden in plain sight.
Background Patients themselves are best placed to provide insights on the lived experience and to lead the analysis of such insights to bring the patient voice into peer-reviewed literature. In doing so, they can meet the authorship criteria for subsequent research publications. It is important to evaluate patient engagement to identify ways to improve future collaborations. Here, we describe the approach taken during a patient-led and patient co-authored analysis of the lived experience of generalized myasthenia gravis, which may be applicable to other indications. We also assessed the quality of patient engagement throughout the research project. Methods We used self-reported experience surveys based on the Patient Focused Medicines Development Patient Engagement Quality Guidance criteria for assessing patient engagement. The surveys were adapted to focus on individual projects and assessed eight domains using a five-point Likert scale. In September 2020, we invited eight patient council members to complete a self-reported experience survey following qualitative lived experience data generation. We calculated the average experience score as a percentage of the maximum possible score. Patient authors (n = 1) and non-patient authors (n = 3) were invited to complete a similar survey in November 2021, with questions customized for relevance, to evaluate the authorship experience following publication of the research. Results Overall, patient council members had a positive experience of taking part in this study, with an average experience score of 90% (71.6/80.0; n = 8). The patient author and non-patient authors rated their authorship experience highly, with average experience scores of 92% (78.0/85.0) and 97% (63.3/65.0), respectively. There were key aspects that contributed to the overall project success (e.g., ensuring that all participants were aligned on the project objectives at the outset and understood their roles and responsibilities). We also identified elements of the approach that could be improved in future collaborations. Conclusion In this patient-led analysis, patient council members, patient authors and non-patient authors had a positive experience of being involved in the project. We gained useful insights into elements that contributed to the project’s success and ways to improve future patient-led projects on the lived experience.
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