{"id":437,"date":"2023-05-19T14:51:10","date_gmt":"2023-05-19T21:51:10","guid":{"rendered":"https:\/\/blogs.ubc.ca\/imhablog\/?p=437"},"modified":"2023-05-19T17:51:14","modified_gmt":"2023-05-20T00:51:14","slug":"a-square-peg-in-a-round-hole-patient-and-public-author-affiliations-in-academic-journals","status":"publish","type":"post","link":"https:\/\/blogs.ubc.ca\/imhablog\/2023\/05\/19\/a-square-peg-in-a-round-hole-patient-and-public-author-affiliations-in-academic-journals\/","title":{"rendered":"A square peg in a round hole: Patient and public author affiliations in academic journals"},"content":{"rendered":"

Le fran\u00e7ais suit \/ French follows<\/em><\/p>\n

by: Dawn P. Richards (patient partner and Five02 Labs Inc, Toronto, Ontario, Canada) and Jim Elliott (independent advocate for patients in research, Wales, UK)<\/p>\n

As more research teams include patient and public authors in their work, the topic of affiliation for these authors is coming to light. The academic publishing model is one which assumes that most, if not all, authors have an academic, health services or industry-based affiliation, however patient and public authors do not necessarily fit this mold. Given that research is bringing to light journal Editors-in Chief beliefs related to patient partner authorship (1), work that identifies how patient partners may meet International Committee of Medical and Journal Editors\u2019 criteria for authorship in patient engagement and patient-oriented research projects (2), and most recently, a study on identifying scientific articles that include patient partner authors (3), we feel this is a timely discussion. Here we share our thoughts on this evolving situation, provide solutions for teams that include these types of authors, and issue a call to action for journal editors.<\/p>\n

Patients and public authors, should they wish to be publicly cited as such in publications, should have an opportunity to choose their preferred type of affiliation. Currently it appears that many patient and public authors are affiliated with a patient organisation to which they belong or the organisation that carried out the research highlighted by the publication. While this may work for some patient and public authors, we argue that this is not the case for all patient and public authors, some of whom may wish to not have an institutional affiliation or who don\u2019t have an institutional affiliation. In fact, for some patient and public authors, needing to affiliate with the institution that is leading the research may not be appropriate. While these individuals may have received some form of compensation for their contribution to the project highlighted in the publication, they are rarely under employment contract to these institutions and certainly rarely act or speak on behalf of the institution. To call these authors affiliated with these institutions may not be the correct interpretation of the relationship. Most patient partners bring an independent perspective to the research they get involved with and may feel that could be compromised by being affiliated to the institution. Being a co-author is a form of reward and recognition for the contribution patient and public authors have made to the research.<\/p>\n

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 <\/p>\n

We propose that these patient and public authors should be able to choose their own affiliations and it is the responsibility of the lead author to offer that.\u00a0 We have recently seen some patient and public authors choose to list their affiliation as \u2018patient partner\u2019 or \u2018patient research partner\u2019 (4,5), or as the location where they live (6). We further suggest that terms such as \u2018public partner\u2019 (7) \u2018independent patient or public partner,\u2019 and others may be useful affiliations. In the event that patient and public authors do have affiliations that make sense for their situations, we also feel that appropriately highlighting that patient and public members have contributed to the work of the publication is important (3).<\/p>\n

We are bringing this issue to light because we feel strongly about contributing to the science and knowledge related to patient and public engagement and involvement. This is an emerging field, and it is important to realize that current processes and systems do not easily accommodate patient and public involvement. As the field of patient and public involvement in research, healthcare, and health policy continues to evolve, so does the importance of being able to understand how and if patient and public partners have contributed to this work, in what ways, and how. Current tools such as the GRIPP (8) and GRIPP2 (9) reporting tools are helpful, as are simple approaches such as detailing who patient and public partners are within the contributions section of publications. Whilst that is clearly important, the contributions section is usually placed at the end of most papers and may be missed by some readers. We feel that it is important that the contribution of patient and public authors is made more visible through an appropriate affiliation on the first page. Moving towards this as a choice for all patient and public contributors to research will start to reveal the full extent and impact of the contributions they make, which has hitherto been far from clear in journal papers (10). The lack of a clear way to indicate that one or more co-authors is a patient and public author leads to an underreporting of the numbers of patient and public partners who have contributed to the writing of published papers. It might also give the impression that patient and public authors lack the skills to do this or that they are not interested, neither of which is true in our experience.<\/p>\n

With this context, we issue a call to action to journal editors to develop an approach to help ensure that patient and public authors who want to be recognised as such can use an affiliation of their choice. At its most basic form, journal submission software should offer flexibility to allow for this type of \u2018affiliation.\u2019 A more advanced exercise would be to develop guidance for lead authors in collaboration with patient and public contributors who have been co-authors of published papers.\u00a0 Specific approaches might need to be developed for academic, commercial and health services organisations that offer some options for appropriate affiliations.<\/p>\n

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L\u2019affiliation des patients et du public dans les articles scientifiques\u00a0: une ambigu\u00eft\u00e9 g\u00eanante<\/h3>\n

Par Dawn P. Richards, patiente partenaire et fondatrice de Five02 Labs \u00e0 Toronto en Ontario (Canada) et Jim\u00a0Elliott, d\u00e9fenseur des droits des patients dans la recherche au pays de Galles (Royaume-Uni)<\/em><\/p>\n

La contribution de patientes, de patients et de membres du public \u00e0 la r\u00e9daction d\u2019articles scientifiques se g\u00e9n\u00e9ralise et projette sur le devant de la sc\u00e8ne la question \u00e9pineuse de leur affiliation. Il est en effet tenu pour acquis que les personnes qui soumettent des articles scientifiques exercent professionnellement dans le milieu de la recherche universitaire, dans les services de sant\u00e9 ou dans l\u2019industrie et poss\u00e8dent \u00e0 ce titre une affiliation \u00e0 un \u00e9tablissement, ce qui ne s\u2019applique pas aux patientes, aux patients et aux membres du public. Au regard des id\u00e9es re\u00e7ues d\u2019un certain nombre de r\u00e9dactrices et r\u00e9dacteurs en chef \u00e0 l\u2019\u00e9gard des articles qui portent la signature de patientes et patients partenaires (1), des conditions de publication que l\u2019International Committee of Medical Journal Editors impose \u00e0 ces personnes en cas de participation \u00e0 des projets de mobilisation ou de recherche ax\u00e9e sur le patient (2) et plus r\u00e9cemment d\u2019une \u00e9tude centr\u00e9e sur les articles scientifiques en copublication par des patientes et patients partenaires (3), nous estimons que le temps est venu de traiter le sujet. Dans les paragraphes qui suivent, nous exprimons notre position sur une situation en constante \u00e9volution, offrons des recommandations aux \u00e9quipes souhaitant s\u2019appuyer sur des auteures et auteurs pr\u00e9sentant un tel profil et lan\u00e7ons un appel \u00e0 l\u2019action \u00e0 l\u2019intention des r\u00e9dactions des revues scientifiques.<\/p>\n

Les personnes qui souhaitent publier des articles en qualit\u00e9 de patientes, patients ou membres du public devraient \u00eatre libres de choisir l\u2019affiliation qui correspond \u00e0 leur situation. \u00c0 l\u2019heure actuelle, nombre d\u2019entre elles sont affili\u00e9es \u00e0 l\u2019organisation de patients qui les repr\u00e9sente ou \u00e0 l\u2019\u00e9tablissement qui pilote le projet de recherche auquel elles participent. Si cette affiliation refl\u00e8te dans certains cas la v\u00e9ritable nature des rapports \u00e9tablis, nous consid\u00e9rons que cela ne concerne pas l\u2019ensemble des patientes, patients ou membres du public qui \u00e9crivent des articles et que ces personnes sont en droit de ne pas \u00eatre affili\u00e9es \u00e0 un \u00e9tablissement. Cette proc\u00e9dure n\u2019est d\u2019ailleurs pas toujours la voie \u00e0 suivre. Si les \u00e9tablissements responsables des projets mis en exergue dans un article scientifique r\u00e9mun\u00e8rent parfois les patientes, patients ou membres du public qui y ont particip\u00e9, cela ne signifie en effet pas pour autant qu\u2019ils le font dans le cadre d\u2019un contrat de travail ou qu\u2019ils accordent \u00e0 ces personnes une autorisation d\u2019agir ou de s\u2019exprimer en leur nom. En de telles circonstances, consid\u00e9rer qu\u2019il existe une relation d\u2019affiliation serait pour le moins inexact. De plus, la plupart des patientes et patients partenaires apportent des points de vue uniques aux \u00e9quipes qui sollicitent leur aide et per\u00e7oivent la copublication d\u2019un article comme une forme de r\u00e9compense et de reconnaissance des efforts qu\u2019elles d\u00e9ploient au service de la recherche. Une affiliation \u00e0 l\u2019\u00e9tablissement responsable du projet pourrait en ce sens entraver leur sentiment d\u2019ind\u00e9pendance intellectuelle.<\/p>\n

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\u00c0 la lumi\u00e8re de ces observations, nous recommandons que les patientes, patients et membres du public participant \u00e0 la r\u00e9daction d\u2019articles scientifiques aient la libert\u00e9 de choisir leur affiliation en toute ind\u00e9pendance et qu\u2019il revienne \u00e0 l\u2019auteure principale ou \u00e0 l\u2019auteur principal de ces articles de la leur offrir. Nous avons r\u00e9cemment remarqu\u00e9 que les noms de \u00ab\u00a0patient partenaire\u00a0\u00bb, de \u00ab\u00a0patient partenaire \u00e0 la recherche\u00a0\u00bb (4, 5) et m\u00eame du lieu de r\u00e9sidence (6) figurent parmi les affiliations choisies. Les termes \u00ab\u00a0partenaire du public\u00a0\u00bb (7) et \u00ab\u00a0patient ind\u00e9pendant ou partenaire du public\u00a0\u00bb m\u00e9ritent \u00e9galement consid\u00e9ration. Dans les cas o\u00f9 l\u2019affiliation de patientes, patients ou membres du public \u00e0 un \u00e9tablissement est parfaitement l\u00e9gitime, nous estimons que la reconnaissance en bonne et due forme de leur contribution \u00e0 la r\u00e9daction de l\u2019article publi\u00e9 est tout aussi importante (3).<\/p>\n

Nous nous exprimons sur ce sujet en raison de l\u2019importance que nous accordons \u00e0 la science de la mobilisation et de l\u2019implication du public, des patientes et des patients dans la recherche. Cette approche vit ses premi\u00e8res heures, mais il est d\u2019ores et d\u00e9j\u00e0 essentiel de prendre conscience que les processus et syst\u00e8mes de publication actuels sont particuli\u00e8rement rigides \u00e0 l\u2019encontre des personnes qui ne poss\u00e8dent pas d\u2019affiliation. \u00c0 mesure que la mobilisation du public, des patientes et des patients dans la recherche, les pratiques de soins et les politiques de sant\u00e9 prendra de l\u2019ampleur, il deviendra essentiel de disposer de moyens permettant d\u2019\u00e9valuer pr\u00e9cis\u00e9ment leur contribution aux travaux men\u00e9s. Les outils actuels, qui suivent le mod\u00e8le GRIPP (8) et GRIPP2 (9), prouvent leur utilit\u00e9, tout comme les approches simples consistant \u00e0 offrir, dans la section Contributions<\/em> des articles, des informations sur l\u2019identit\u00e9 et l\u2019apport des patientes, patients et membres du public \u00e0 leur r\u00e9daction. Malgr\u00e9 son importance, nous notons n\u00e9anmoins que cette section est g\u00e9n\u00e9ralement plac\u00e9e \u00e0 la fin des articles et tend \u00e0 ne pas attirer l\u2019\u0153il du lectorat, raison pour laquelle nous recommandons qu\u2019elle b\u00e9n\u00e9ficie d\u2019une meilleure exposition sur la premi\u00e8re page. Une telle d\u00e9cision en faveur du public, des patientes et des patients qui participent \u00e0 la recherche permettrait de souligner sans \u00e9quivoque leurs contributions, ce qui, en l\u2019\u00e9tat actuel des choses, serait une petite r\u00e9volution (10), d\u2019autant plus que l\u2019absence de consensus autour de la question de la mise en \u00e9vidence du statut de patiente, de patient ou de membre du public dans la copublication d\u2019articles se traduit par une sous-estimation de leur nombre r\u00e9el et donne en outre l\u2019impression que ces personnes ne poss\u00e8dent pas les comp\u00e9tences requises pour \u00e9crire des articles ou que l\u2019exercice ne les int\u00e9resse tout simplement pas, ce qui d\u00e9note un d\u00e9calage net avec la r\u00e9alit\u00e9 que nous observons.<\/p>\n

Dans ce contexte, nous appelons l\u2019ensemble des r\u00e9dactions des revues scientifiques \u00e0 mettre au point une approche qui accordera aux personnes qui contribuent \u00e0 la publication d\u2019articles \u00e0 titre de patientes, de patients et de membres du public la libert\u00e9 de choisir leur affiliation. Au minimum, les logiciels de soumission d\u2019articles scientifiques devraient offrir \u00e0 ces personnes la possibilit\u00e9 de s\u00e9lectionner le type d\u2019affiliation qui correspond \u00e0 leur situation. Bien que l\u2019exercice soit plus complexe, l\u2019id\u00e9al serait toutefois d\u2019\u00e9tablir des lignes directrices \u00e0 l\u2019intention des auteures principales et auteurs principaux qui publient leurs articles en collaboration avec des patientes, des patients ou des membres du public. Des approches adapt\u00e9es aux besoins des \u00e9tablissements universitaires, des organismes du secteur commercial et des services de sant\u00e9 qui proposent des possibilit\u00e9s d\u2019affiliation justes pourraient \u00e9galement \u00eatre \u00e9tudi\u00e9es.<\/p>\n

\"\"<\/p>\n

References \/ R\u00e9f\u00e9rences<\/h4>\n
    \n
  1. Cobey, K.D., Monfaredi, Z., Poole, E. et al.<\/em> Editors-in-chief perceptions of patients as (co) authors on publications and the acceptability of ICMJE authorship criteria: a cross-sectional survey. Res Involv Engagem<\/em> 7, 39 (2021). https:\/\/doi.org\/10.1186\/s40900-021-00290-1<\/a><\/li>\n
  2. Richards, D.P., Birnie, K.A., Eubanks, K. et al.<\/em> Guidance on authorship with and acknowledgement of patient partners in patient-oriented research. Res Involv Engagem<\/em> 6, 38 (2020). https:\/\/doi.org\/10.1186\/s40900-020-00213-6<\/a><\/li>\n
  3. Oliver, J., Lobban, D., Dormer, L. et al.<\/em> Hidden in plain sight? Identifying patient-authored publications. Res Involv Engagem<\/em> 8, 12 (2022). https:\/\/doi.org\/10.1186\/s40900-022-00346-w<\/a><\/li>\n
  4. Richards, D.P., Jordan, I., Strain, K., Press, Z. Patients as Partners in Research: How to Talk About Compensation With Patient Partners, Journal of Orthopaedic & Sports Physical Therapy, 50, 8 (2020). https:\/\/www.jospt.org\/doi\/10.2519\/jospt.2020.0106<\/a><\/li>\n
  5. Richards, D.P., Cobey, K.D., Proulx, L. et al.<\/em> Identifying potential barriers and solutions to patient partner compensation (payment) in research. Res Involv Engagem<\/em> 8, 7 (2022). https:\/\/doi.org\/10.1186\/s40900-022-00341-1<\/li>\n
  6. Tembo D, Hickey G, Montenegro C, Chandler D, Nelson E, Porter K et al. Effective engagement and involvement with community stakeholders in the co-production of global health research BMJ <\/em>2021; 372 :n178 doi:10.1136\/bmj.n178<\/li>\n
  7. Newlands, R., Duncan, E., Presseau, J. et al. Why trials lose participants: A multitrial investigation of participants\u2019 perspectives using the theoretical domains framework. J. Clin. Epidemiol. March 12, 2021, https:\/\/doi.org\/10.1016\/j.jclinepi.2021.03.007<\/a><\/li>\n
  8. Staniszewska, S., Brett, J., Mockford, C., & Barber, R. (2011). The GRIPP checklist: Strengthening the quality of patient and public involvement reporting in research. International Journal of Technology Assessment in Health Care,<\/em> 27<\/em>(4), 391-399. doi:10.1017\/S0266462311000481<\/li>\n
  9. Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research BMJ <\/em>2017; 358 :j3453 doi:10.1136\/bmj.j3453<\/li>\n<\/ol>\n
      \n
    1. Public Involvement in Research Impact Toolkit (PIRIT). See section on \u2018The difference public contributors make to the research outcomes and dissemination of results\u2019https:\/\/www.cardiff.ac.uk\/marie-curie-research-centre\/patient-and-public-involvement\/public-involvement-in-research-impact-toolkit-pirit<\/a><\/li>\n<\/ol>\n","protected":false},"excerpt":{"rendered":"

      Le fran\u00e7ais suit \/ French follows by: Dawn P. Richards (patient partner and Five02 Labs Inc, Toronto, Ontario, Canada) and Jim Elliott (independent advocate for patients in research, Wales, UK) As more research teams include patient and public authors in … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":96106,"featured_media":439,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5],"tags":[35],"class_list":["post-437","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-engagement","tag-patient-engagement"],"_links":{"self":[{"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/posts\/437","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/users\/96106"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/comments?post=437"}],"version-history":[{"count":10,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/posts\/437\/revisions"}],"predecessor-version":[{"id":456,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/posts\/437\/revisions\/456"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/media\/439"}],"wp:attachment":[{"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/media?parent=437"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/categories?post=437"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.ubc.ca\/imhablog\/wp-json\/wp\/v2\/tags?post=437"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}