The rise of patient co-authorship: Ensuring authentic, respectful, and accurate representation of the lived experience in medical publications

The inclusion of patients in medical publications is no longer a novel concept. However, ensuring the patient voice is included through co-authorship remains a complex and evolving area. Ben Johnson, Patient Engagement Consultant at MEDiSTRAVA, an Inizio Company, recently held a workshop at MAPS EMEA 2024 in Madrid on this topic, read about it below.

This May, I was lucky enough to travel to Madrid to attend the MAPS* EMEA 2024 conference where I co-led an interactive workshop titled “Hearing the patient voice: Understanding barriers and opportunities to patient co-authorship of publications”. I was delighted to be joined by co-hosts Lucie Laštíková, Patient Advocate, President and Clinical Trial Ambassador, Pacienti IBD (Czech Republic) and Louise Roch, Scientific Communications Manager, Boehringer Ingelheim (Germany).

Our theme had a clear publications focus – a potentially tangential topic for a medical affairs audience – but an important theme nonetheless that upholds the principles of diversity, equity, and inclusion, and one that we knew would bring value to our audience.

In our session we spoke about the unique position of medical affairs in facilitating inclusion of the patient voice and internal cross-functional alignment to support strategic goals. These are both critical factors in ensuring authentic, targeted, and compliant inclusion of patients as co-authors.

During the workshop, we explored many of the complexities around patient co-authorship, and echoed broadly common views that while the concept is not new, it is still largely considered an innovative piece of the scientific publications jigsaw, and one that comes with a degree of nuance and uncertainty about what best practice looks like. We discussed that this is an important part of a quickly evolving landscape, where industry is accelerating collaboration with patient partners across the lifecycle in parallel with external trends towards patient empowerment in healthcare more broadly.

We spoke about the disparities that can exist between disease experiences and the often overly scientific focus of traditional medical literature. Our take-home message is that the patient voice can bring balance to authorship groups, particularly when discussing experiences or quality of life and can reflect lived experiences in authentic, respectful, and, importantly, accurate ways.

We knew it was important to tackle compliance during our session; an area likely to incite questions. My co-presenters and I shared case studies from our separate backgrounds in patient advocacy, industry, and agency relating to publications that included patient partners.

Our final poll of the workshop asked one question, should patients be paid for authorship? Responses were broadly reflective of opinions across the landscape: a mix of positive and negative sentiment with others unsure on their position. We expect this to be an evolving topic over the coming years as industry stakeholders investigate their company positions further.

Patient co-authorship is an evolving area where best practice is likely to shift and become redefined over coming years. While the latest updates to the GPP^† guidance in 2022 went some way to supporting publication stakeholders to engage with patients, there is still a need for further clarity, particularly around aspects such as payment of patient authors.

While involvement at any stage of development is of value, early patient involvement can benefit multiple stakeholders and publication plans in addition to better facilitating fulfilment of ICMJE^‡ authorship criteria. We expect the pace of change to be fast over the coming years, and we hope will drive a culture shift in scientific publications towards a mindset of seeking ‘reasons to exclude’ rather than ‘reasons to include’ patient partners as a new benchmark.

Should you wish to explore opportunities around patient authorship or patient engagement more broadly within your organisation, please don’t hesitate to get in touch.

*: MAPS: Medical Affairs Professional Society

†: Good Publication Practice, http://www.acpjournals.org/doi/10.7326/M22-1460

‡: ICMJE, International Committee of Medical Journal Editors