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There is an urgent and passionate call to increase diversity, equity, and inclusion in scientific publishing. Consistent with these principles, patients are (co)authoring publications. However, little is known about patient-authored publications and patient authors. Our objective was to conduct the first study on patient authors to inform evidence-based authorship practices that promote diversity, equity, and inclusiveness. This poster was presented at the 19th Annual Meeting of the International Society for Medical Publication Professionals (2023).

Journals use a range of external platforms to host and index plain language summaries (PLS), such as PubMed. We assessed the extent to which peer-reviewed publications are including PLS and how easy it is for readers to find PLS. This poster was first presented at the 2023 European Meeting of the International Society for Medical Publication Professionals and encored at the 19th Annual Meeting of the International Society for Medical Publication Professionals (2023). The abstract has been published in Current Medical Research & Opinion.

Additional file 1. Self-reported experience surveys.

Plain language summaries of publications (PLSPs) are standalone, peer-reviewed journal articles written in nontechnical language that provide a concise overview of published scientific journal articles. Our aim was to understand who reads PLSPs, how readers find them, and if readers think PLSPs are useful. This poster was first presented at the 2023 European Meeting of the International Society for Medical Publication Professionals and encored at the 19th Annual Meeting of the International Society for Medical Publication Professionals (2023). The abstract has been published in Current Medical Research & Opinion.

Plain language summaries of publications (PLSPs) are peer-reviewed, standalone articles written in nontechnical language that present information from 1 or more publications. Ideally, they should include at least 1 author of the original publication to ensure an accurate representation of the content. Our objective was to understand the authorship of PLSPs. We also wanted to explore if PLSPs with additional authors had further content such as individual perspective sections. This poster was presented at the 19th Annual Meeting of the International Society for Medical Publication Professionals (2023). The abstract has been published in Current Medical Research & Opinion.

Patient-experience research, defined as “capturing patients’ experiences, perspectives, needs, and priorities,” is increasingly valued, especially in health technology assessment (HTA). Our objective was to quantify patient-experience publications and patient authorship, compare publication accessibility, and evaluate alignment of patient authorship with HTA patient involvement values. This poster was presented at the 19th Annual Meeting of the International Society for Medical Publication Professionals (2023).

Additional file 1. Patient involvement reported using the GRIPP2 short form.

As patient authorship increases, publication professionals may face increasing responsibilities in identifying, guiding and measuring the output of patient authors. Meta-research on patient-authored publications could help publication professionals meet these responsibilities. Our objective was to develop a bot to enable scalability of meta-research on patient-authored publications. This poster was presented at the 19th Annual Meeting of the International Society for Medical Publication Professionals (2023).

We successfully published a peer-reviewed, citeable, plain language podcast summarizing data presented at a scientific congress. The process we followed will facilitate the development of further plain language podcasts, increasing the accessibility of data presented at scientific congresses. This poster was first presented at the 18th Annual Meeting of the International Society for Medical Publication Professionals (2022) and encored at the 2023 European Meeting of the International Society for Medical Publication Professionals. The abstract has been published in Current Medical Research & Opinion.

Plain language summaries (PLS) can help make complex scientific information more accessible to lay audiences. Our aim was to understand healthcare professionals interest in, and use of, PLS as publication extenders. This poster was presented at the 2022 European Meeting and encored at the Annual Meeting of the International Society for Medical Publication Professionals. The abstract has been published in Current Medical Research & Opinion.

Additional file 3: Table S1. WG5 core team contributors and PFMD network contributors.

Additional file 1: Publication PLS.

We used a self-reported experience survey to assess the quality of patient engagement throughout the development of a unique patient-led and co-authored analysis of the lived experience of myasthenia gravis. This poster was presented at the 18th Annual Meeting of the International Society for Medical Publication Professionals (2022). The abstract has been published in Current Medical Research & Opinion.

Additional file 2: GRIPP2 Short Form.

Shared decision-making is transforming medical practice. We used a bibliometric approach to demonstrate a surge in publications relating to shared decision-making. Medical communicators should be aware of, and could contribute to, these publications This poster was presented at the 18th Annual Meeting of the International Society for Medical Publication Professionals (2022). The abstract has been published in Current Medical Research & Opinion.

Additional file 5: ‘How-To’ Guide: executive summary and annexes.

The aim of this article is to help members of the Medical Affairs Professional Society (MAPS) "navigate the rewarding, but at times challenging, journey of involving patients in publications. We hope that by sharing our top 5 tips we can make that journey a faster, easier, and more rewarding one for our Medical Affairs colleagues and their patient partners."Copyright 2018 MAPSPreviously online and open access at:http://maps.instantmagazine.com/publications/elevate-magazine/patient-involvement-in-publications/(Not Found: Error 404 as of December 2020)

ObjectivePatient involvement in industry-sponsored research is being encouraged. Our objective was to conduct the first international survey of industry and agency staff to investigate the extent and type of patient involvement in publications of industry-sponsored research, as well as the perceived barriers and opportunities.Research design and methodsA cross-sectional survey was conducted (29/12/2017–10/01/2018) using an 8-item online questionnaire. Pilot testing was conducted to validate survey functionality and estimate response time. The survey, which could be completed anonymously, was distributed via a secure email link to:(1) industry-sponsor staff (eg, medical affairs, patient partnerships, publications) who had expressed an interest in patient involvement in publications and (2) agency staff (eg, publication planners, medical writers) who have or may work on patient-authored publications. One email reminder was provided. No incentives for completion were offered.ResultsResponse rates were 31% (12/39) for industry and 47% (174/373) for agency staff. Collectively, although 70.4% (131/186) of responders had experienced/observed patients being thanked for participation in a published study, only 5.4% (10/186) had experienced/observed patients as authors on industry-sponsored publications. The most frequently cited main barrier limiting patient involvement in publications was ‘It is rarely or never considered an option’ (114/186; 61.3%) and the most frequently cited main opportunity to enhance patient involvement in publications was ‘Lay (plain language) summaries’ (103/186; 55.4%).ConclusionsThis international survey of industry and agency staff with an interest in patient publications indicates that patient involvement in publications is limited. These survey results could be used to develop a roadmap, co-created with patient leaders, journal editors, industry sponsors and publication professionals, to guide patient involvement in publications of industry-sponsored research.