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The patient’s voice in publications – where to start?

Patient involvement in publicaiton planning_2.PNGInvolving patients in publications may be challenging, but their unique perspective can be invaluable. An article in the first issue of Elevate Magazine from the Medical Affairs Professional Society (MAPS) provides tips to make including a patient’s voice in the publication process more efficient, effective and rewarding. Drawing from their research and first-hand experience of working with patients, Professor Karen Woolley and colleagues note that, “understanding what matters to patients and their support networks is critical as we work to develop best-in-class and cost-effective healthcare solutions”.

The authors call for medical affairs professionals already working with patient-authors to share their experiences. They recommend publishing “a companion paper about the effect of patient authorship“ alongside a patient-authored research paper. This could help to establish a best practice for publishing research that minimises risks and maximises the benefits of using patient’s unique perspectives and insights. They further suggest that by focussing on “easy first steps”, for instance by providing plain language summaries, and working with ‘champions’ (eg patient advisors and early adopters), patient involvement can be promoted and encouraged.

It is anticipated that innovations in patient involvement in publications may be met by concerns over compliance, for example with the International Federation of Pharmaceutical Manufacturers & Associations (IFPMA) Code of Practice. The authors recommend that stakeholders re-check the Code, which does not intend to restrict public disclosure of scientific findings. With leading journals (eg The BMJ and Research Involvement and Engagement) already including publications authored by patients, the authors also predict that the next version of the Good Publication Practice Guidelines will include recommendations for working with patients.

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Summary by Lobke Starr-Vaanholt, PhD

Dr. Lobke Starr-Vaanholt is a biomedical scientist and freelance science writer. Contact Lobke: LobkeStarr@gmail.com

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With thanks to our sponsors, Aspire Scientific Ltd and NetworkPharma Ltd.


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