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.
Keywords: Lived experience; Myasthenia gravis; Patient and public involvement; Patient author; Patient perspective; Qualitative research.
WHY DID WE DO THIS RESEARCH?: Involving patients in research is becoming more common. Listening to patients can help healthcare teams to better understand the impact of living with a condition. Some patients taking part in research can go on to be an author of an article that describes the findings. We describe how we assessed the quality of patient involvement in a research project to better understand views of patients living with a rare condition. HOW DID WE ASSESS PATIENT INVOLVEMENT?: We asked patients to complete surveys to find out about their experience of taking part in a patient-led analysis of a rare condition. This can highlight challenges that they may have faced during the project. WHAT WERE THE MAIN FINDINGS?: Patients who took part in this research and those who were authors of the research article had a positive experience. There were several key factors that helped the project to be a success. We also identified ways to improve future projects designed to gain patient insights on living with other conditions.
© 2023. The Author(s).