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KJT at ISMPP 2022: Including patients as authors provides valuable insight that strengthens publications

KJT is attending the 18th Annual Meeting of the International Society of Medical Publication Professionals (ISMPP) this week. Yesterday we shared insights from Patricia Hurter’s presentation on diversity and how it drives innovation. Today I attended an insightful talk delivered by Yuan Wang of Bayer and Dakota Fisher-Vance of Young Adult Cancer Connection entitled ‘Democratizing medical research and publishing: How to work with patients as authors on company-sponsored studies.’

The primary objective of medical research is to improve the wellbeing of patients but aligning the direction and/or communication of medical research with the needs of patients can be challenging. Some of this disconnect can arise from the complex nature of medical research. Scientific manuscripts can have an extremely specialized focus, lots of technical jargon, and plenty of acronyms! Inviting patients to serve as authors on scientific manuscripts is one way that we can try to encourage the development of manuscripts that patients can benefit from as much as researchers.

In their session, Yuan and Dakota shared stories and offered practical advice to support medical communications professionals looking to work with patient authors. Few medical communications professionals have experience working with patient authors, and not all patients with a particular disease may feel willing or capable of serving as an author on a scientific manuscript.

Dakota shared her personal experience as a patient advocate and author. Dakota was finishing up her undergraduate degree in biology when she experienced a health emergency and was diagnosed with a rare genetic disease that predisposed her to colon cancer. After undergoing surgery to remove her colon, she experienced complications which caused a desmoid tumor to form. Desmoid tumors are the second leading cause of death in people with Dakota’s disease. Fortunately, after six years of oral chemotherapy Dakota’s tumor stabilized. Now Dakota uses her experience to act as Global Patient Advocacy Senior Manager at BioCryst Pharmaceuticals where she builds relationships with patient advocacy organizations and finds ways to bring patient perspectives into drug development.

Dakota represents an extremely well-qualified patient author with powerful patient experiences and extensive knowledge of the pharmaceutical industry. However, a patient author does not need to be knowledgeable about the pharmaceutical industry to play an important role in medical communications.

Yuan and Dakota offered some useful advice for identifying and working with patient authors to enhance medical publications:

  • A good candidate for patient authorship is articulate and informed about their disease community’s experiences and is well-versed in relevant scientific publications
  • In rare diseases, a patient often needs to manage the big picture of their care. Many different types of doctors may be involved because there may not be a single doctor type that specializes in the disease. This makes the voice of patient authors especially valuable in rare diseases.
  • Medical writers should take time to walk potential patient authors through the manuscript writing process, ICMJE authorship criteria, and potential time commitment required before diving into a project.
  • For medical publications professionals interested in working with patient authors, Dakota and Yuan recommended exploring the resources available at Patient Authorship Resources.

In the past year at KJT, I had my first experience working with a patient author on a paper focused on the medical journey of patients diagnosed and treated for nonalcoholic steatohepatitis (NASH) – a progressive form of liver disease. Conducting and communicating survey research involving patients and healthcare providers is a particular strength of ours at KJT. Adding a patient author added a level of depth and understanding to the narrative of our paper. Our patient author had undergone liver biopsy when struggling with her illness and was a strong advocate for discussing the role of non-invasive alternatives to liver biopsy for the diagnosis of NASH. Overall, it was an enriching experience to include a patient author on the NASH manuscript for our team. I hope to utilize the advice and resources shared by Yuan and Dakota in this talk to work with more patient authors in the near future!

Tomorrow we will be attending a session on the anxiously awaited fourth iteration of the Good Publication Practice guidelines (GPP4). GPP4 guides medical publication professionals in best practices for dissemination of industry-sponsored research and GPP4 is expected to include important updates on the role of the patient and how we deliver information to patients among other topics.