The European Medical Writers Association (EMWA) recently dedicated an issue of its quarterly publication, Medical Writing, on writing for patients. The issue includes ten articles focused on this theme, covering a wide range of topics from social media to publications.

With the events surrounding COVID-19, the importance of communicating medical information to the public has seemingly never been more important. In the foreword, Juan García Burgos and Paul Blake, writing on behalf of the European Medical Association, highlight the increasing importance of transparency and providing quality information to patients and the general public. They explain:

“If we fail to explain and connect with the EU citizens whom we serve, other less trustworthy sources may fill the gap with misinformation and inaccurate facts.”

Writing for patients is a diverse theme and requires many different skill sets. Below is a selection of the topics covered in this special issue.

Lay summaries for Phase I trials in healthy volunteers

Professional medical writers are likely becoming increasingly familiar with plain language summaries, though perhaps less so in the Phase I clinical trial setting. However, lay summaries are mandated by European Union Clinical Trials Regulation for all clinical trial phases. Clive Brown et al. describe a template developed to help medical writers to produce meaningful lay summaries of Phase I trials in healthy volunteers. The template aims to ensure that study designs and results are described in a consistent manner across different types of Phase I trials, addressing challenges such as ensuring that information is accessible and meaningful without oversimplification and managing the release of commercially sensitive information.

Promoting equity in understanding: a cross-organisational plain language glossary for clinical research

When developing plain language summaries, a key challenge is health literacy, which was found to be poor or inadequate in nearly half of respondents who took part in a European Health Literacy survey, across eight countries. With this in mind, a new global initiative is establishing a glossary of plain language terms used commonly in clinical research. Proposed benefits of a harmonised plain language clinical research glossary are:

• consistency
• accuracy
• efficiency
• ease of translation
• electronic interoperability
• transparency
• trustworthiness.

Establishing a patient publication steering committee (PPSC)

Increasingly patient involvement is occurring earlier in the publication life cycle. A recent innovation in industry publication practices is the development of a PPSC. Their purpose is to plan and oversee the timely and ethical development of high-quality publications on disease burden and the patient journey, as identified by patients themselves. Authors from UCB Pharma describe their plans to partner with patients to establish a PPSC, identifying the key roles, governance, and documentation required.

Based on their successful feasibility study, the authors think that establishing a PPSC “has the potential to change industry publication practices to enable early, compliant, and important partnerships with patients in the publication life cycle”.

We were excited to read this dedicated issue on an important theme in the medical communications industry.

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Summary by Robyn Foster PhD from Aspire Scientific

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With thanks to our sponsor, Aspire Scientific Ltd