Patients as Authors of Company-Sponsored Journal Publications
Part B—Publisher Perspective
Laura Dormer
Future Science Group
Richard Stephens
Research Involvement and Engagement, BMC
Caroline Halford
Medical Education, Springer Healthcare

atients are becoming increasingly involved in medical publications. This includes taking an active role in the publication process, as well as reading peer-reviewed journals that have traditionally considered their audience to be healthcare specialists. As academic publishers have traditionally worked with researchers and professionals across academia and industry, they are less familiar with working with patient communities or members of the public. This has led to a need to develop new ways of working that are appropriate both for the publishers, and for the patients and patient representatives with whom they are engaging.

In Part B of our series on patients as authors of company-sponsored journal publications, we discuss the ways in which patients are already working with publishers, the challenges that can be encountered, and how these can be and are being addressed.

Patients as Authors

The roles of patients in medical publications are many, and the number of patients taking them up is increasing. Patients are taking on authorship roles, peer-reviewing content, joining Editorial Boards, and becoming journal editors with oversight of the content a journal chooses to publish. Each of these roles acknowledges the unique and valuable perspectives a patient brings to the peer-reviewed literature and is essential for ensuring that medical research is truly patient-centric.

Journals have policies on the criteria that individuals need to fulfill to qualify for authorship; many use the International Committee of Medical Journal Editors (ICJME) authorship criteria. Patient involvement throughout the drug-development process is increasing, encouraged by both the US Food and Drug Administration and the European Medicines Agency. This in turn increases the potential for them to meet these authorship criteria and become co-authors when the resulting research is published. Patient-authored original research can be very influential, in terms of downloads, citations, and Altmetrics, such as this recent piece on a rare disorder.

Patients are also contributing to article types beyond the publication of original research, including perspective-style articles and narrative reviews discussing the patient experience. Some examples of this include the BMJ Patient and Public Perspectives, the Plain Language Summary of Publication articles from the Future Science Group (which can include a patient perspective section), peer-reviewed podcast articles, Adis Patient-Physician Perspective articles, and narrative reviews.

The benefits of patient authorship on medical publications are numerous (Figure 1).

Benefits of patient authorship
Figure 1. Benefits of patient authorship.
Although patient authorship is increasing, it is still comparatively rare and is also hard to track with accuracy. Tracking is important, to ensure that the impact of activities to increase patient authorship can be monitored and improved. Some efforts are being made to address this, for example by publishers adding a “Patient author” affiliation for these individuals when an article is published; however, this has yet to be widely adopted. This may be for several reasons, one being a lack of awareness of this option among publishers and editors, meaning it is not included in author guidelines. But in addition, many individuals, while supportive of the need to identify lay authors, would not identify themselves as “patients,” rendering this affiliation tag inappropriate. In an ideal scenario, publisher and indexing systems would allow for a wider variety of affiliations, so appropriate tags can be included for all authors involved in a publication.

Patients as Reviewers

By including patients as peer reviewers of submitted articles (a practice currently used by a small but increasing number of journals, for example the BMJ), journals can gain valuable insight into the patient-centeredness (or lack thereof) of research and reviews, as well as the accessibility of the information being presented. Patients can review a variety of content for a journal, and their insight is particularly valuable for content aimed at a nonspecialist audience such as plain language summaries (PLS).

Patients as Editors

In a similar manner to patient reviewers, patients can fulfill an important role on journal advisory boards, providing input and advice to journals on a wide variety of issues, from improving journal engagement with patients, to the accessibility of content (e.g., the BMJ Patient Advisory Panel). They can also provide feedback on submissions relating to the patient experience, review patient-centric features/articles, and suggest topics/gaps for commissioned content.

The journal Research Involvement and Engagement provides a notable example, as the role of co-editor-in-chief is held by a patient (co-author of this article, Richard Stephens), which, given the journal’s remit to develop the evidence base to inform the practice of patient and public involvement in research, is an extremely valuable and ground-breaking step.

Patients as Readers

In recent years, patient and public readership of peer-reviewed journal articles has increased, aided by the growth in open-access content.

Effective dissemination is needed to reach this new audience, beyond the traditional indexing services such as PubMed that are used by academia and industry to find content. In this context, publication on accessible platforms and the use of social media to disseminate content is extremely valuable.

In addition, publishers are adopting publication enhancements that extend the reach of articles and increase comprehension and accessibility (for example, PLS, infographics, and videos). Article enhancements are also often very “shareable” via social media.

New article types and features (such as PLS) and specialist journals (including the previously mentioned Research Involvement and Engagement, along with others such as the Journal of Patient Experience) are also emerging that are specifically geared toward patient engagement and readership.

Potential Barriers to Patient Involvement in Publications—and Some Solutions!

Although patient involvement in journal publications is increasing, several barriers in the traditional journal publishing process can hinder this.

As mentioned, fulfilling journal authorship criteria, designed with traditional academic and industry authors in mind, can be challenging for patients, and publishers’ interpretation of these criteria as they apply to patients can also be variable, leading to exclusion. Some guidance is available to help with this, and encouraging patient involvement early in the research process is also a valuable aid to these criteria being met.

Publishing software programs (such as manuscript submission and peer-review systems) can be challenging to navigate even for those familiar with using them, and they have not been designed with patient authors, reviewers, or editors in mind. Simplification of these systems where possible would be beneficial to all, and any future updates should consider the variety of potential users of these systems.

Further barriers to patient involvement were discussed in Part A of this article series and include awareness among the patient community of what opportunities exist, juggling demands of disease management, job or family commitments, lack of confidence/encouragement to work alongside industry and academic authors, and privacy concerns.

Discussion of patient engagement among publishers themselves is increasing, and work is being done to make publishing processes more accessible. However, to benefit fully from this, it will be vital for these opportunities to be widely shared via as many channels as possible (to patient organizations, via conferences involving patients, on social media, and more), and on a continuing basis.

What’s Next?

The availability of resources and guidelines to support patient involvement in medical publications is improving, from toolkits and guidelines (such as those created by Patient Focused Medicines Development and Envision), to a training course for patient authors and reviewers. As these resources expand and evolve, it can be hoped that the level and variety of patient involvement in medical publications will also increase, to the benefit of all involved in healthcare.
References available upon request.