Table 3 Evidence-based best practice recommendations for involving patients as authors
Stage of manuscript preparation | Recommendation | Reference # (evidence supports basis of recommendations) |
|---|---|---|
Before | 1. 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) | |
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 | ||
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) | ||
4. Ensure support for patient authors from non-patient authors, especially the primary author and publication guarantor | ||
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) | ||
6. Identify relevant publication and patient involvement guidelines that will be followed (e.g. CONSORT, GRIPP2, GPP3) | ||
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) | ||
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) | ||
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) | ||
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) | ||
During | 11. 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) | |
12. Be flexible in how patient authors can provide input (e.g. telephone, email, in person) | ||
13. Allow time before, during and after authorship meetings to address concerns and questions about patient authorship – from patient and non-patient authors | ||
14. Provide timely and regular feedback to patient authors on their contributions and group dynamics | ||
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) | ||
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]) | ||
After | 18. Provide updates on progress with the publication | |
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) | ||
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) | ||
21. Consider preparing a companion publication on the effect of patient involvement |