Patient Authorship Resources

Explore the Resources
"Patient authors can help make publications relevant and readable. Change the input, enhance the output."

Patient co-author
Woolley KL, et al. Curr Med Res Opin. 2019;35(suppl 2)

Overview

Patients are increasingly co-authoring peer-reviewed publications at all stages of the medicines development life cycle. Their unique insights enhance the body of evidence across numerous therapy areas. Practical guidance can support patient authors to publish successfully and collaborate with non-patient authors.

At Envision the Patient, we are committed to powering patient voices in publications through ethical, substantial patient involvement. Based on our expertise in publications, our own research, and the published work of others, we have collated a series of resources to facilitate patient authorship.

These resources:

Are for anyone who is interested in patient-partnered publications, including patients, industry sponsors, and academic collaborators

Have been reviewed by patient partners

Are open access under the Creative Commons license
(CC BY 4.0)

Explore the resources below

How can patients meet authorship criteria?
Guide for patient authors on meeting the International Committee of Medical Journal Editors (ICMJE) criteria
Guide for patient authors on meeting the International Committee of Medical Journal Editors (ICMJE) criteria Patient authors must meet the ICMJE criteria, but the expertise they bring may not be familiar to industry or academic collaborators. This resource provides examples for how patient authors can meet each criterion Download
How can patients find out about the key rights and responsibilities of authorship?
Plain language summary of the Good Publication Practice (GPP) guidelines
Plain language summary of the Good Publication Practice (GPP) guidelines This plain language resource can help patients who are new to authorship understand the rights, roles, and responsibilities related to becoming an author Download
How can patient authors learn about the process of publishing peer-reviewed articles?
Plain language overview of the publications process
Plain language overview of the publications process This flowchart can help less experienced authors to understand the steps involved in developing a peer-reviewed publication Download
Workgroup of European Cancer Patient Advocacy Networks (WECAN) Training Course: Patients in Publications This open access, self-directed online course, developed by WECAN and Envision Pharma Group, trains patient advocates on how to engage in publications as authors and peer-reviewers Visit link
Infographic: The Basics about Conference (and Other) Abstracts A resource co-created by Dr Dawn Richards and patient partners to explain conference abstracts: what they are, their purpose, and typical parts Visit link
What information do patient authors have to disclose?
Guide for patient authors on disclosures
Guide for patient authors on disclosures Patient authors must meet publishing transparency standards but may have concerns around disclosing personal data. This resource explores key considerations in this area Download
Can patients be reimbursed for authorship activities?
Some sponsors choose not to pay for time spent authoring a publication to avoid any perception of influence. For those who do offer reimbursement, guidance is available to help estimate reasonable reimbursement rates. The National Health Council Patient Compensation Tools Visit link National Institute for Health Research: Payment guidance for researchers and professionals Visit link Strategy for Patient-Orientated Research: Recommendations on patient engagement compensation Visit link Patient Engagement Remuneration for Fair Market Value Visit link
How can patient authorship be assessed?
Patient Author Experience Survey
Patient Author Experience Survey This self-assessment survey is designed to gain feedback directly, quickly, and easily from patient and non-patient authors, when working together as co-authors on a publication Download
Hidden in plain sight? Identifying patient authors This poster, presented at the 2021 International Society of Medical Publication Professionals Annual Meeting, discusses how the PubMed "Patient Author" affiliation tag can be used to identify patient authored publications Visit link
Hidden in plain sight? Identifying patient-authored publications This commentary article in Research Involvement and Engagement, highlights how PubMed can be used to find patient-authored publications and outlines factors driving the increase in patient authorship Visit link
Which patients could be co-authors of industry-sponsored publications?
Patient author candidate framework
Patient author candidate framework This resource is for sponsors of patient-partnered research who are planning a patient co-authored publication. It provides transparent, relevant, and objective criteria to consider which patients are most likely to meet authorship criteria Download
What further guidance is available?
Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations This 2019 publication from Research Involvement and Engagement, co-authored by patient and non-patient authors, explores how we can maximize the benefits and minimize the risks of patient involvement in publications Visit link
Evidence-based recommendations for patient authorship
Evidence-based recommendations for patient authorship This resource summarizes 21 evidence-based recommendations from the publication above. It provides practical steps that research teams can take when working with patient authors at each stage of manuscript development Download
Guidance on authorship with and acknowledgement of patient partners in patient-oriented research This 2020 publication from Research Involvement and Engagement, led by Dr Dawn Richards and including members of the Strategy for Patient-Oriented Research Chronic Pain Network's Patient Engagement Committee, aims to facilitate conversations between researchers and patient partners around authorship and acknowledgment​ Visit link

We hope you find the resources above useful and we welcome any feedback or suggestions to improve this website.

Disclaimer: Envision the Patient is part of Envision Pharma Group. Envision Pharma Group receive funding from pharmaceutical companies to develop communications, including publications.