In recent years, the medical writing landscape has evolved to include a crucial new voice: the patient. As patient-centered care and shared decision-making gain momentum, patients are increasingly contributing to medical literature, advocacy materials, and even peer-reviewed research.
However, collaborating with patient authors requires a nuanced approach, balancing the importance of lived experience with the need to align with scientific publication processes. Medical writers can play a vital role in facilitating this process—helping patients navigate the complexities of medical writing while maintaining the integrity of their voice.
Who Can Become Patient Authors?
Taylor & Francis Author Services answers this question by describing several types of potential patient authors, including
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Those who live with a disease or condition
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Caregivers or family members of those people
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Representatives of patient advocacy groups focused on specific health issues
Patient authors typically have a unique perspective and can provide valuable insights into medical research and health education.
The Benefits of Patients as Authors
Patient authorship is a growing trend that advocates say can improve medical research. An article in The Map Newsletter, published by the International Society for Medical Publication Professionals (ISMPP), outlines the ways that patient authors can add value.
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An increase in the likelihood that research will address topics of importance to patients and the health care community
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More advocacy by patient communities for published research
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Faster and better plain language summaries of publications
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Enhanced trust between patients, researchers, and the health care industry
Understanding the Patient’s Role in Medical Writing
How can patients participate in medical writing? Options include
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Patient narratives describing lived experiences in journals or advocacy publications
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Plain language summaries of science publications or clinical trials
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Co-creation of educational materials for health care professionals and fellow patients
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Research design that aligns with real-world needs
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Authorship of medical research publications that reflects patient engagement in scientific studies
While these contributions bring valuable firsthand perspectives, patients often need support in structuring content, following medical writing conventions, and navigating the steps to publish medical and scientific studies. This is where medical writers step in—as guides, collaborators, and quality controllers.
Preparing Patients for Authorship
Patient authors who begin working with researchers and medical experts in scientific publishing may not feel they have an equal voice. Tom Gegeny, MWC, ELS, CMPP shares in the podcast Patient Authors of Research Studies that a medical communicators can advocate for patient authors and their contributions. “One of the things you can do is be proactive in communicating that there’s a patient author and what that brings to the publication,” Gegeny said.
To help new authors participate successfully, medical writers need to understand the challenges patient authors often face. Patients as Authors: 5 Key Things Medical Communicators Should Know, which is part of the AMWA Knowledge Builder series, is a relevant learning opportunity for medical writers who want to work with patient authors.
A successful collaboration begins with transparent communication about roles and responsibilities. Here are some key areas to clarify.
1. Defining Authorship and Contribution
Patients may assume that their personal experiences alone qualify them as sole authors of a piece. However, in scientific and regulatory writing, authorship often follows established guidelines, such as those from the International Committee of Medical Journal Editors (ICMJE). Guidance from ICMJE states that authors should meet four criteria to publish scientific research.
A plain language—and patient-friendly—summary of these authorship guidelines comes from ISMPP's Good Publication Practice Guidelines (GPP). These make expectations clear for patients who want to be authors of scientific research and give examples of how patient authors can participate.
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“Provide a valuable contribution to the report (eg, use your experience as a patient to help design the study, or to help identify and describe the research findings that are most important to patients).
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Provide useful comments at each stage of writing the report.
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Read and approve the final version of the report.
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Be willing to take responsibility for the accuracy and integrity of the report and help to answer questions about the report.”
Patients and others who contribute to publications but do not meet authorship criteria may instead be listed as contributors (with permission) in the acknowledgement section. It is important that medical communicators confirm that patients understand how their contributions will be noted, whether as authors, contributors, or through acknowledgments.
2. Explaining Publication Processes
Another area where medical writers can guide patient authors is in demystifying scientific publication processes. The patient-oriented Chronic Pain Network in Canada, which has recommended ways to include patients as partners and authors in research studies, states that developing a common understanding of the research and publication process is useful for everyone involved. To this end, medical writers must
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Explain critical concepts, such as manuscript submission protocols, peer review processes, and open-access versus subscription-based journal options
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Outline the step-by-step process from draft development to final approval
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Highlight expectations for multiple revisions and editorial feedback
3. Setting Realistic Timelines
Unlike medical researchers or clinicians, patient authors may face time constraints that limit the amount of time they can devote to the project. It is essential to
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Check with patient authors to find out their availability
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If possible, give early access to materials for review
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Build in contingencies for a sudden lack of availability due to work, illness, or other commitments
4. Educating About Conflicts of Interest
Medical writers can educate patient authors about the importance of transparency in research publications. This includes
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Explaining that conflicts of interest arise when personal, financial, or professional relationships could influence the content or credibility of the publication.
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Encouraging full disclosure by informing patients that they should declare affiliations with advocacy groups, funding from pharmaceutical companies, or any financial interests in products discussed.
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Using journal-specific conflict of interest forms and guiding patients through completing disclosure forms required by specific journals.
5. Recognizing Patient Resources and Barriers
Some patients may have limited resources compared to medical researchers and others on the team, depending on their location and situations. Not all patients have the same level of access to technology or Internet services or familiarity with tools to be used during the project. Medical writers should discuss expectations about communication methods and digital tools and find out what will work for patients.
Guiding Patients Through the Writing Process
Patient authors may not realize that they don’t have to do all the writing work. Medical communicators will need to explain how they can support them in sharing their perspectives and aligning with scientific publication processes. Here are four tips for working together.
1. Offering Options for Capturing Input
Many patients struggle with writing in structured formats, particularly in scientific or medical contexts. Providing alternatives like conducting interviews or engaging in email conversations instead of requesting drafts allows patients to freely share their stories. Later, the writer can extract key themes and insights. Some recommendations for this process are
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Use open-ended questions to prompt detailed responses
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Encourage patients to reflect on how their experiences relate to medical or scientific topics
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If interviews are recorded, transcribe and structure the conversation into an initial draft for review
2. Balancing Authenticity with Clarity
Preserving the patient’s voice is critical, but their writing must still be clear, engaging, and aligned with editorial standards. Medical writers can work with patient authors to
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Simplify medical jargon when necessary
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Ensure that writing flows logically and stays on topic
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Edit for conciseness and readability without distorting meaning
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Format to follow manuscript preparation guidelines
3. Addressing Emotional and Ethical Considerations
Patients involved in research about health conditions they have and writing about personal health experiences may find the experience rewarding but emotionally taxing. Medical writers should be prepared to navigate
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Emotional triggers that arise during the writing process
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The patient’s comfort level with sharing specific details
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Ethical concerns about privacy, consent, and data accuracy
Creating a safe space for discussion and giving patients control over the final content can foster trust and confidence in the collaboration.
4. Allowing Time for Questions and Feedback
As the project progresses, regular check-ins with patient authors should be part of the process. It is best practice for medical writers to provide ongoing feedback to patient authors and schedule regular times to discuss issues and respond to questions about the writing and publication process.
Finalizing and Publishing Patient-Authored Content
Once the draft is finished and refined, the next step is preparing it for publication. Medical writers should use their expertise to
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Ensure compliance with journal or publisher guidelines. Verify that all submission requirements are met. Confirm proper formatting, referencing, and ethical disclosures.
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Work with patients on final approvals and revisions.
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Clearly acknowledge the patient’s role, whether as a coauthor or contributor or through acknowledgment.
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Discuss promotion strategies, such as sharing the piece on advocacy platforms, health care websites, or social media.
Additionally, if the content is being published in a scientific journal, it is important to ensure that all disclosures and conflicts of interest are transparently documented.
The Future of Patient-Authored Medical Content
As patient voices continue to gain prominence in health care communication, medical writers must be prepared to adapt their skills to accommodate this shift. Understanding the challenges patients face in writing for scientific publications and providing structured support means that their contributions are most impactful.
Medical writers can help bridge the gap between personal experience and scientific communication—ensuring that patient-authored content serves both the individual storyteller and the broader health care community.
AMWA acknowledges the contributions of Thomas Gegeny, ELS, MWC, CMPP, in the development of this AMWA resource.
The following checklist Guiding Patients as Authors in Medical Writing is an AMWA Members-Only Resource.
If you're a member of the American Medical Writers Association (AMWA) and don't see the checklist content below, click to submit your AMWA member profile email to download and view it.
