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Published VersionCC BY V4.0, Open Access
Journal article
Hidden in plain sight? Identifying patient-authored publications
Research Involvement and Engagement, Vol.8(1), pp.1-6
2022
PMCID: PMC8996208
PMID: 35410628
Abstract
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.
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.
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.
Details
- Title
- Hidden in plain sight? Identifying patient-authored publications
- Authors
- Jacqui Oliver (Corresponding Author) - Envision Pharma GroupDawn Lobban (Author) - Envision Pharma GroupLaura Dormer (Author) - Future Science Group (London, UK) - FSGJoanne Walker (Author) - Future Science Group (London, UK) - FSGRichard Stephens (Author) - Research Involvement and Engagement (London, UK) - Res. Involv. Engagem.Karen Woolley (Author) - University of the Sunshine Coast, Queensland, School of Health and Sport Sciences - Legacy
- Publication details
- Research Involvement and Engagement, Vol.8(1), pp.1-6
- Publisher
- BioMed Central Ltd.
- Date published
- 2022
- DOI
- 10.1186/s40900-022-00346-w
- ISSN
- 2056-7529
- PMID
- 35410628; PMC8996208
- Copyright note
- Copyright © The Author(s) 2022. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
- Organisation Unit
- University of the Sunshine Coast, Queensland; School of Health and Sport Sciences - Legacy
- Language
- English
- Record Identifier
- 99629437902621
- Output Type
- Journal article
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