Resources for Patient Authorship & Publication

[Chris Johnston]

For those interested in or struggling to navigate authorship as a patient partner, Dawn Richards posted a fantastic list of resources last week on LinkedIn which others have since added to.

I’m posting the link to the original post below, but also the contents of the post for those not regularly using LinkedIn.

Link to Dawn’s original post

Text and links from Dawn’s post:
"Last week I gave a talk about co-authoring with #PatientPartners. In preparing, I compiled a list of resources related to publishing with patient partners on a research team that might be valuable for others (and noting that many of these were co-created with patient partners). This isn't an exhaustive list, so please share any others that you know of to keep the resource list growing!"

• a paper on authorship with patient partners, including how patient partners can meet the criteria for authorship, definitions of some terms related to publication, and a flow chart about the general steps to academic publishing (....which is really quite bizarre if you're new to it) - (my authors include Kathryn (Katie) Birnie, PhD RPsych, Therese Lane, Jennifer Stinson, Delane Linkiewich, Lesley Singer, Kimberly Begley, K. Eubanks)
• a 4-minute video (because who's got time to read a paper ?) that covers what co-writing a paper with patient partners as authors might look like - (my team-mates included Maureen Smith, Nancy Butcher, Colin Macarthur, Ami B., Dr. Andrea C. Tricco, D. Moher, M. Prebeg)
• a resource that explains how to read a scientific paper and what to expect in/tools that might help you with each section (my co-author is J. Kempster)
• a session at PxP 2024 about publishing with patient partners - hear from patients themselves (Harry Iles-Mann, Nidhi Swarup, and Sophia Walker, facilitated by Clare Ardern) about some of their experiences
• a course about patients and publications, built especially for patient advocates by WECAN Foundation and Envision Pharma Group
• a paper introducing the GRIPP2 reporting checklist to help share how patients were partners in your published work (developed by Sophie Staniszewska, Simon Denegri OBE and colleagues)
• an explainer video about research and the publication process from the Journalology group at the Ottawa Hospital Research Institute
• a collection of patient authorship resources hosted by Envision Pharma Group
• two blogs, each with a checklist: a blog for patient partners and a blog for those who engage patient partners, about being asked/asking to review manuscripts - (These were the result of a collab with Perri Tutelman, PhD, Don Wood, Chantale Thurston, CPA, CGA, Anna Samson and Trinity L.)

Other resources added by:

• Ruth Cox: The Editor, Australian Occupational Therapy Journal Louise Gustafsson led a great paper that consumer Elizabeth Miller and I were co-authors in regarding #Authorship #PatientEngagement #PPI #CCI https://onlinelibrary.wiley.com/doi/10.1111/1440-1630.12946 I am really pleased that my #OccupationalTherapy profession is committed to consumer authorship
• Karen Woolley: Also worth remembering that it is now 40 years since the ICMJE first published their authorship criteria. Patient authors have proven that they CAN meet these criteria. Explicit (eg, transparent and published) recognition of the legitimacy of patient authorship from #ICMJE could be a strong catalyst for increased acceptance of patient authorship. Let's convince that lagging minority (!) of journal editors who did not think it was "acceptable" for patients to be authors (see Cobey et al., 2021). Such a shame that far, far, far too many patient-authored publications are still not easily discoverable simply because we have not yet reached consensus on affiliation terminology. We are missing out on too much evidence to convince critics that patient authorship is real, here to stay, and adds unique value to the evidence base (more here: https://onlinelibrary.wiley.com/doi/full/10.1002/leap.1607) #PatientAuthor
• Elizabeth Lynch: We did some work in Australia about how to recognise the lived experience of co-authors when people are comfortable to disclose this (often not easy to see if affiliated with e.g. health service or university) https://pubmed.ncbi.nlm.nih.gov/39447312/
• Peter Bates: This on author names and pseudonyms https://share.google/5DJXkX08ZuSxN2VBo also https://share.google/vkcWkI4wHq0t0tkp8
• Karen Woolley: Well done Peter on putting this document together. The Committee on Publication Ethics (COPE; wide reach!) has issued a position on requests to publish anonymously https://publicationethics.org/guidance/cope-position/handling-requests-publish-articles-anonymously
• Trishna Bharadia: The ISMPP (International Society for Medical Publication Professionals) Patient Engagement Task Force has put together a repository of resources: https://www.ismpp.org/patient-engagement And there's also some which have been collated by the Faculty of Pharmaceutical Medicine Working with Patients and Communities Forum: https://www.fpm.org.uk/about/committees/working-in-partnership-with-patients-and-communities-forum/patient-and-public-involvement-resources/ And then the Taylor & Francis Group Patient Authorship Guidance is a good resource from a publisher: https://authorservices.taylorandfrancis.com/editorial-policies/guidance-for-patient-authors/