Document is current

Article History

Accepted: 5 June 2025

First Online: 2 July 2025

Change Date: 25 August 2025

Change Type: Update

Change Details: The original online version of this article was revised to include the supplementary files.

Declarations

:

: No external funding was received to assist with the production of this manuscript. Ashfield MedComms, an Inizio company, funded the open access and other publication-associated fees. Authorship contributions to this article were voluntary and unpaid.

: TB undertakes paid and unpaid consultancy and advocacy work for various stakeholders in the life sciences and healthcare industries, including pharmaceutical companies, medical communications agencies, medical publishers, academia and patient organisations. She is a visiting lecturer at the Centre for Pharmaceutical Medicine Research, King's College London. She serves on the editorial boards of The Research Post and Neurology and Therapy, is on the patient advisory panel of Therapeutic Advances in Drug Safety, and is a member of the PLS advisory panel for Taylor & Francis, Sage Publishing and Becaris, for which she receives honoraria for PLS reviews. She is also a member of the International Society for Medical Publication Professionals (ISMPP) Patient Engagement Taskforce and the ISMPP EU 2025 planning committee and an advisory board member (unpaid) for the UK’s Patient Information Forum. JG is a patient author and CEO of Patvocates and declares that he is delivering unpaid, voluntary work for non-governmental organisations, academia, professional societies and public bodies in half of his productive time. He earns his living in the remaining time by consulting and training in research-based companies and non-profit organisations on patient engagement. The non-governmental organisations receive support from competing companies of the pharmaceutical industry without proximity, dominance or dependence on individual companies as well as through publicly funded EU projects and philanthropic funders. RR is a paid employee of Ashfield MedComms (an Inizio Company). LL is a paid employee of Integration Center Prague and Pacienti IBD. She undertakes paid and unpaid advocacy and consultancy for various stakeholders in the healthcare industry and research, including pharmaceutical companies. Lucie is an active clinical trial ambassador and a global immunology board member of The Center for Information and Study on Clinical Research Participation, for which she receives honoraria, and has previously received payment from Inizio for facilitating and participating in a workshop but has not received payment for this publication. LDP and DT have no conflicts of interest. GR is employed by GSK and holds financial equities in GSK. BJ is a paid employee of MEDiSTRAVA (an Inizio Company). LR is a paid employee of Boehringer Ingelheim. All authors advocate for increased involvement of patients in publications.

: Data sharing is not applicable to this article as no new data were created or analysed in this study.

: Not applicable.

: Not applicable.

: Not applicable.

: Not applicable.

: All authors contributed to the research concept and design. RR wrote the first draft of the manuscript, and all authors commented on subsequent versions of the manuscript. All authors read, edited and approved the final manuscript.

: Artificial intelligence was not used at any stage of the development of this manuscript.