“Of course, patients should be involved as co-authors of medical research papers. It’s our story you’re telling.”
- Richard Stephens, Patient Author and Co-Editor-in-Chief of Research Involvement and Engagement, London, UK1
It is increasingly understood that meaningful improvements in healthcare can only be achieved when doctors and patients work together. Such partnerships require a significant shift of power towards patients and, as the BMJ put it, "a renewed focus on the core mission of health systems." Examples of this shift can be seen through the work of patient advocacy groups and online patient communities, and the increase in patient access and control of medical data. It can also be seen in the growing frequency of patient authors in medical publications.2
What is a patient author?
A patient author can be defined by three criteria:1,3
Someone who lives with or is affected by a disease or condition. This might include people at risk of having a particular condition, regardless of whether they currently receive medicines or vaccines to prevent or treat it, as well as family members, carers, and people involved in patient groups
Someone who provides unique and valuable input from the patient perspective
Someone who meets all the criteria for authorship (e.g. criteria from the International Committee of Medical Journal Editors)
How often are patient authors included in publications?
Oliver et al. have reported that the total number of patient-authored publications available was one in 2019, two in 2020 and 18 in 2021—using the same method, there are now 76 (estimated using the affiliation search function in PubMed and the search term ‘patient author’). This steady but unspectacular uptake of patient authorship has been reflected in a recent survey which reported that whilst the majority (69%) of journal editors-in-chief believe patient authorship is acceptable, 31% still see it as inappropriate.1,4
Publishing has tended to be a slow-moving industry in terms of change, and it is possible that those within the industry feel that patient authors represent an alteration to established publishing standards. An issue that could cause hesitancy is that a non-diverse patient selection could lead to a non-representative account of the patient experience. Connecting to wider patient groups, carers, and other patient-related organizations would help to limit this.5,6
What do patient authors contribute to publications?
Patient authors can provide unique and valuable contributions through influencing study design, collecting and analysing data, writing plain language summaries, and highlighting key outcomes and data that relate to patient priorities. These insights lead to wider benefits, including an improved relevance and accessibility of research. Patient authors can also contribute to improved outcomes and quality of life through providing insights into unmet needs and research design. In doing so, patients can support the fundamental purpose of the publication of scientific information – helping to move science forward. Below are two examples of how patient authors have shaped the content of medical publications.5,7,8
Examples of patient authorship
1. Anaplastic large cell lymphoma in people with breast implants
In the case of breast implants and systemic disease, patient advocacy and communication have helped to bring diagnosis to the fore. Accordingly, breast implant associated anaplastic lymphoma (BIA-ALCL) has seen a clear rise in incidence since the first reported case in 1997, due to growing awareness in patients and medical professionals. The importance of patient communication in BIA-ALCL treatment is clearly demonstrated in this article, with patients driving disease awareness. ‘Patient perspective’ call-out boxes show how patient authors can emphasize key insights and place the patient voice at the heart of articles. Here the author demonstrates that despite there being breast implant social media groups with over 200,000 people, doctors are still not recognising symptoms and subsequently patients are not being informed about cancers. In situations where the medical field responds slowly and disease awareness is low, amplifying patient opinions from communication groups by adding patient voices to the published literature could be a powerful tool to help reach wider audiences in the medical community.9
2. Commentary: Patient perspectives on artificial intelligence; what have we learned and how should we move forward?
A typical style of patient authorship is patient commentary in which the patient perspective on a present disease or issue is discussed. This article focuses on how little published literature there has been which covers how patients view the suggested benefits of AI in healthcare. Additionally, it is highlighted that patient involvement in the AI development process frequently focuses more on user interfaces and less on actually meeting patient needs. The authors go on to outline some important recommendations and insights into how stakeholders and product design can work better with and for patients.
The involvement of patients feels especially important in newer areas of medicine, like AI. Whilst it may feel like the patient voice is playing catch up in subjects like breast implant cancers, with new topics there is a great opportunity for the patient to be a leading voice from early on. As Camaradou and Hogg say, ‘If the medicine, science, and code are cutting edge, shouldn’t the approach to patient perspective integration be too?’10
What next for patient authors?
In general, involvement of patients in healthcare research has been increasing but progress remains slow. To speed up and maximise the benefits of this trend, barriers to patient authorship need addressing. These include: complex publication processes and jargon, patients feeling uncertain about contributing, a lack of access to resources, and difficulties for patients managing diseases alongside being authors. Whilst these barriers are substantial, in most cases they can be easily rectified through proper planning and investment.11
At TVF, we see removing or minimizing these barriers as crucial to working with patient authors on medical publications and we use these principles to support our work with patient ambassadors. It is clear that the support of the whole medical publications industry is needed to assist patient authors through establishing new processes and frameworks that allow patients to have their voice heard in healthcare research.1
By Bertie Lloyd
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