“Patient authors can help make publications relevant and readable. Change the input, enhance the output.”
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, where possible, been reviewed by patient partners.
Are open access under the Creative Commons license (CC BY 4.0).
Resources and Guidance
Patient authorship of medical research publications: An evolution, revolution, and solution?
This 2024 publication from Learned Publishing, co-authored by patient and non-patient authors, discusses the current understanding about patient authorship and how this can be progressed.
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
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.
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.
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.
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.
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.
The National Health Council Patient Compensation Tools
National Institute for Health Research: Payment guidance for researchers and professionals
Strategy for Patient-Orientated Research: Recommendations on patient engagement compensation
Patient Engagement Remuneration for Fair Market Value
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.
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.
Do Patient-Experience Publications Have Authors with Patient Experience?
This poster, presented at the 2023 International Society of Medical Publication Professionals Annual Meeting, assessed how many patient experience publications were authored by those with patient experience and whether patient authorship was associated with increased publication accessibility.
Diversity in Patient Authors: A Randomized Bibliographic Analysis
This poster, presented at the 2023 International Society of Medical Publication Professionals Annual Meeting, was the first study on patient authors to inform evidence-based authorship practices that promote diversity, equity, and inclusiveness.
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.
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.
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.
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.
Patient authorship of medical research publications – an evolution, revolution, and solution?
This 2024 publication in Learned Publishing, co-authored by patient and non-patient authors, proposes actions that different stakeholders could take to better understand patient authorship and to contribute to guidance on best practices.
