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Table 3 Evidence-based best practice recommendations for involving patients as authors

From: Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations

Stage of manuscript preparationRecommendationReference # (evidence supports basis of recommendations)
Before1. Ideally, involve patients in the question formulation stage (e.g. involve patients in publication planning to ensure publications address unmet needs that are relevant and important to patients)[19, 21, 22, 24,25,26,27]
2. Identify patient author candidates who are interested in contributing, have relevant expertise (e.g. lived experience) and can meet authorship criteria (i.e. no guest authorship); document consented contact details for patient authors in publication management software[19, 23,24,25, 27]
3. Clarify and document author and contributor roles and responsibilities (e.g. signed authorship agreements should help ensure expectations are clear and understood; patient involvement should be substantial; archive signed agreements)[19, 21, 23,24,25, 27]
4. Ensure support for patient authors from non-patient authors, especially the primary author and publication guarantor[23, 25, 27]
5. Appoint a designated contact person for patient authors to reach out to with queries (e.g. a Certified Medical Publication Professional who has publication expertise, project knowledge and time to support patient authors)[23, 25, 27]
6. Identify relevant publication and patient involvement guidelines that will be followed (e.g. CONSORT, GRIPP2, GPP3)[24, 25]
7. Check that funding facilitates patient author involvement (e.g. upfront payment of travel expenses for author meetings and conference presentations, translator fees if necessary)[19, 21, 23,24,25,26,27]
8. Prepare a publication timeline that facilitates patient author involvement (e.g. early delivery of materials to review; contingency time for unexpected unavailability – illness, employment, other commitments)[21, 23,24,25, 27]
9. Consider providing a publication induction guide and training for patient authors (e.g. plain language summary of GPP3, glossary of publication terms, overview of publication process)[19,20,21, 23,24,25, 27]
10. Consider how to proactively and systematically evaluate the effect of patient involvement (e.g. document feedback via publication management software; administer patient authorship experience tools)[19, 21, 23, 25,26,27]
During11. Recognize and respect diversity in the authorship team – everyone should contribute and be listened to. Patient authors can provide unique and useful input from their lived experience (e.g. they are not expected to be statisticians, clinicians, medical writers)[19, 23, 25]
12. Be flexible in how patient authors can provide input (e.g. telephone, email, in person)[19, 22,23,24,25,26,27]
13. Allow time before, during and after authorship meetings to address concerns and questions about patient authorship – from patient and non-patient authors[24, 25, 27]
14. Provide timely and regular feedback to patient authors on their contributions and group dynamics[19, 21,22,23, 25,26,27]
15. Consider presenting key results at authorship meetings and in publications that could make it quicker and easier for non-specialists to understand and interpret findings (e.g. use data visualization, flowcharts)[20, 21, 26, 27]
16. Recognize that patient authors may provide stronger contributions if able to provide input in their local language[26]
17. Document, in the manuscript, the involvement and role of patient authors (i.e. identify which authors are patients [e.g. Author Affiliation section] and describe their authorship contributions [e.g. Contributorship section])[21, 27]
After18. Provide updates on progress with the publication[24, 27]
19. Involve patients in the publication dissemination plan (e.g. raising awareness of the publication via patient advocacy groups, community and personal networks, social media platforms; contributing to and testing plain language summaries – ensuring cultural and linguistic appropriateness)[19,20,21,22,23, 25,26,27]
20. Encourage continued participation (e.g. patient authors presenting results – target geographically close conferences, leverage remote presentation tools; involvement in follow-up publication projects and publication steering committees)[19, 22,23,24, 26]
21. Consider preparing a companion publication on the effect of patient involvement[19, 25]
  1. CONSORT Consolidated Standards of Reporting Trials, GPP3 Good Publication Practice 3, GRIPP2 Guidance for Reporting Involvement of Patients and the Public