Empowering voices: The rise of patient-authored publications in healthcare
The tradition of documenting medical knowledge spans ancient folklore and early medicinal practices, evolving into today's evidence-based medicine. Throughout this evolution, publications have served as crucial tools for disseminating medical information. Traditionally, these documents were authored and later peer-reviewed by medical professionals.
However, within this established structure lies an untold narrative: the voice of the patient. Despite the scientific foundation of professionally authored publications, the perspectives and experiences of those directly affected by medical conditions are often overlooked, missing opportunities for more varied and diverse publications.
From patient to author
Patient authoring is the concept of creating an article or publication that is authored by a patient and published in a peer-reviewed journal. (1) This includes patients publishing their own research and co-authoring with research teams to present data. Recent years have seen an increase in such publications, with a study in 2020 finding that patient-authored articles in the British Medical Journal rose from 31% in 2015 to 49% in 2020. (1)
This trend highlights the growing recognition of the importance of including patient voices in research publications, providing unique perspectives and opportunities for improved understanding among patients and the wider scientific community. However, patients must meet the following criteria for authorship to ensure the credibility and relevance of their contributions:
They must live with or be affected by the studied disease or condition. (1)
They must provide unique and valuable input from the patient’s perspective to publication. (1)
They must meet all the International Committee of Medical Journal Editors criteria to be an author, including substantial contribution, drafting or reviewing the work, and final approval and agreement to be accountable for all aspects of the work. (1)
As the pharmaceutical industry focuses on involving patients in drug development, individuals are increasingly eager to contribute to research. (1) They seek information from peer-reviewed publications and aim to develop authorship skills, collaborating with research teams. Stakeholders, including major funders such as the National Institute of Health Research and the Patient-Centered Outcomes Research Institute, are also recognising the importance of integrating patient perspectives into research efforts. (1)
4 key benefits of patient authored publications
1. New ideas
Patients' lived experiences and diverse perspectives offer invaluable contributions to research teams, stimulating discussions and fostering innovation. (2) Their unique insights into diseases or conditions can increase understanding and motivation within teams, ultimately enhancing the quality and relevance of research publications.
2. New strategies
By being a patient themselves or associated with patients, a patient author can offer a unique perspective on strategies for patient involvement, accessibility, recruitment, and retention. (2) Their insights can help navigate challenges and provide alternative viewpoints from their lived experiences.
3. Improved relevance
The relevance of the research to its intended population is paramount, and patient authors offer valuable insight to support alignment with the needs of those it impacts. (2) Their contributions can provide honest advice and guidance on research methods and objectives. They can also enhance the clarity and accessibility of research findings by offering unique perspectives on strategies to optimise information dissemination, therefore ensuring it is accessible to all patients. (2)
4. Increased credibility
The presentation of research data is essential to the credibility of study outcomes. Patient-led data presentation can help to inspire trust and confidence that the interpretation reflects current patient priorities. (2) By involving a patient author, researchers gain insights into the language nuances relevant to addressing patient concerns, thereby enhancing the acceptability and resonance of the research findings. (2)
Absence of a patient voice
While maintaining a strong scientific foundation is essential, excluding patient authors may result in overlooking their invaluable perspectives from lived experience. This could lead to missed opportunities to refine strategies and enhance publication credibility and accessibility. Furthermore, sponsors may forego certain funding opportunities from major funders who prioritise or mandate patient involvement.
Recognising patient authors as a means to develop holistic and representative publications with broader accessibility is essential in navigating an increasingly patient-centric landscape.
Whether you are looking for more information on patient authoring or ad-hoc or long-term publications support, contact us at info@synthesishealth.co.uk to learn more about how we can work together to maximise the relevance, reach and credibility of your content.
References:
Oliver J, Lobban D, Dormer L, Walker J, Stephens R, Woolley K. Hidden in plain sight? Identifying patient-authored publications. Res Involv Engagem. 2022;8(1):12. doi:10.1186/s40900-022-00346-w
Arnstein L, Wadsworth AC, Yamamoto BA, et al. Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations. Res Involv Engagem. 2020;6:34. doi:10.1186/s40900-020-00190-w