Guidance on authorship with and acknowledgement of patient partners in patient-oriented research

Richards, Dawn P.; Birnie, Kathryn A.; Eubanks, Kathleen; Lane, Therese; Linkiewich, Delane; Singer, Lesley; Stinson, Jennifer; Begley, Kimberly N.

doi:10.1186/s40900-020-00213-6

Cited by 64 publications

(53 citation statements)

References 7 publications

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“…In this commentary, some members of this group and the study team share their reflections on their experiences, from inception through to closure of the group, which coincided with the duration of the study. We have written this commentary collaboratively, informed by publication and authorship recommendations provided by Richards et al [ 17 ]. The group was chaired by JW and supported by HC and RF.…”

Section: Introductionmentioning

confidence: 99%

“PPI? That sounds like Payment Protection Insurance”: Reflections and learning from a substance use and homelessness study Experts by Experience group

Foster

Carver

Wallace³

et al. 2021

Res Involv Engagem

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Background Patient and Public Involvement in research is important for citizenship, accountability and transparency, and has the practical benefit of helping to ensure its quality and applicability. Involving members of the public in research is becoming increasingly commonplace, in the UK and internationally. It is essential that public involvement is inclusive of individuals and their diverse life experiences, including challenging experiences that may be associated with stigma and social exclusion. The involvement of people with lived/living experience of substance use and homelessness in research is increasing in response to increased recognition of the importance of inclusion and the benefits conferred to research. Main body In this commentary, we share our own experiences of being part of a Patient and Public Involvement group that was convened during a feasibility study of a peer-delivered harm reduction intervention. We are a diverse group but share experience of the field of substance use/homelessness, as people with lived/living experience, and as researchers and practitioners. We share our reflections and learning, as well as offer recommendations for researchers working in our field. Our group worked together to make a positive and deliberate contribution to the study. This did not happen by chance but required the development of mutual trust and respect, with each member having a commitment to support the group for its two-year duration. Short conclusion It is important for researchers to appreciate that meaningful Patient and Public Involvement is very valuable but requires a commitment from all involved. Regarding our field of substance use and homelessness specifically, it is essential that people with these experiences have opportunities to contribute to research and can do so in a meaningful way. People with lived/living experience are able to bring to life the rich tapestry of others’ experiences. However, the involvement must be neither tokenistic nor indifferent to the wider challenges common to these experiences.

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Section: Introductionmentioning

confidence: 99%

“PPI? That sounds like Payment Protection Insurance”: Reflections and learning from a substance use and homelessness study Experts by Experience group

Foster

Carver

Wallace³

et al. 2021

Res Involv Engagem

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“…A systematic review, co-authored with patients, on patient involvement in research publications, identified 21 evidence-based recommendations to help minimize the potential risks and maximize the potential benefits of patient authorship [ 26 ]. Patient partners and researchers from the Chronic Pain Network have published a narrative review that provides guidance for patient and nonpatient authors on patient authorship [ 27 ]. More recently, based on demand by patient advocates for practical guidance on how to author peer-reviewed publications, international patient advocates and certified medical publication professionals created the first free online ‘Patients in Publications’ training course for patient advocates (launched in June 2021) [ 28 , 29 ].…”

Section: Emerging Evidence and Guidance On Patient Authorshipmentioning

confidence: 99%

Hidden in plain sight? Identifying patient-authored publications

Oliver¹,

Lobban²,

Dormer

et al. 2022

Res Involv Engagem

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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.

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“…Alternatively, new guidance specific to patient partners could be developed. Recently, the Strategy for Patient-Oriented Research Chronic Pain Network, which is funded by the Canadian Institutes of Health Research, shared a Guidance document on authorship with and acknowledgement of patient partners in patient-oriented research [ 19 ]. This document was co-developed by patients and researchers.…”

Section: Discussionmentioning

confidence: 99%

Editors-in-chief perceptions of patients as (co) authors on publications and the acceptability of ICMJE authorship criteria: a cross-sectional survey

et al. 2021

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Background Access to, and awareness of, appropriate authorship criteria is an important right for patient partners. Our objective was to measure medical journal Editors-in-Chief’ perceptions of including patients as (co-)authors on research publications and to measure their views on the application of the ICMJE (International Committee of Medical Journals Editors) authorship criteria to patient partners. Methods We conducted a cross-sectional survey co-developed with a patient partner. Editors-in-Chief of English-language medical journals were identified via a random sample of journals obtained from the Scopus source list. The key outcome measures were whether Editors-in-Chief believed: 1) patient partners should be (co-)authors and; 2) whether they felt the ICMJE criteria for authorship required modification for use with patient partners. We also measured Editors-in-Chief description of how their journal’s operations incorporate patient partner perspectives. Results One hundred twelve Editors-in-Chief responded to our survey (18.7% response rate; 66.69% male). Participants were able to skip any questions they did not want to answer, so there is missing data for some items. 69.2% (N = 74) of Editors-in-Chief indicated it was acceptable for patient partners to be authors or co-authors on published biomedical research articles, with the remaining 30.8% (N = 33) indicating this would not be appropriate. When asked specifically about the ICMJE authorship criteria, and whether this should be revised to be more inclusive of patient partners, 35.8% (N = 39) indicated it should be revised, 35.8% (N = 39) indicated it should not be revised, and 28.4% (N = 31) were unsure about a revision. 74.1% (N = 80) of Editors-in-Chief did not think patients should be required to have an academic affiliation to published while 16.7% (N = 18) and 9.3% (N = 10) indicated they should or were unsure. 3.6% (N = 4) of Editors-in-Chief indicated their journal had a policy that specifies how patients or patient partners should be considered as authors. Conclusions Our findings highlight gaps that may act as barriers to patient partner participation in research. A key implication is the need for education and for consensus building within the biomedical community to establish processes that will facilitate equitable patient partners inclusion.

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Guidance on authorship with and acknowledgement of patient partners in patient-oriented research

Cited by 64 publications

References 7 publications

“PPI? That sounds like Payment Protection Insurance”: Reflections and learning from a substance use and homelessness study Experts by Experience group

“PPI? That sounds like Payment Protection Insurance”: Reflections and learning from a substance use and homelessness study Experts by Experience group

Hidden in plain sight? Identifying patient-authored publications

Editors-in-chief perceptions of patients as (co) authors on publications and the acceptability of ICMJE authorship criteria: a cross-sectional survey

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