As plain language content becomes more and more integral to the communication of medical and scientific research, do you know how to make the most of plain language options to help patients discover, access and read your content? Future Science Group share their experiences from the past year publishing standalone plain language summaries of publications (PLSPs) in their journals.
Over the past few years there has been a transformation of pharma-funded medical research, with the need for transparency, accessibility, diversity and inclusivity becoming ever more important. Patients are now taking centre stage and companies are beginning to engage with patients, their caregivers and patient advocates throughout the life cycle of developing new treatments. One important output of this change is the growing need for plain language summaries (PLSs) that summarize the complex results of medical research in language that can be understood by all interested audiences, regardless of their level of medical experience.
The different types of plain language documents have been described elsewhere. Recent guidance from Open Pharma1 and shared experiences from companies like Pfizer have meant that companies now need to make PLS integral to their publication plans to ensure transparent communication of medical and scientific research.
However, developing PLSs is just the first step; how patients discover and access these summaries is equally important. At Future Science Group, we have recognized this need and publish PLSs as standalone articles in our journals, known as plain language summaries of publications (PLSPs); our initiative has been described elsewhere. It’s been just over a year since we published our first PLSP in Future Oncology2,3 and we have published many more since.
Here we discuss what we’ve learned on our journey so far, to guide anyone looking to develop PLSPs.
The title says it all
The title is your ‘hook’ to help patients and other interested readers to find and go on to read the PLSP. So, the title should say exactly what the article is about. We also recommend including the words ‘plain language summary’ in the title, so it’s clear what the reader is going to find in the article.
Your audience dictates language and reading level
Not all PLSPs are intended for patient audiences. Some articles are developed specifically to be read by non-specialists such as general practitioners. So, thinking about who you want to read the PLSP will dictate the level of detail needed. Making it clear in the article who the audience should be helps the reader decide if the summary is going to be useful for them.
Patients really are the experts
Our PLSP initiative would not have been possible without our Advisory Panel, many of whom are patients themselves. Our patient panellists, as well as other patient reviewers, have provided invaluable input into each PLSP and are crucial to the peer review of all PLSP articles we publish. When developing a PLSP, consider asking a patient to review the draft to ensure they can understand the content and it includes the details they want to know.
As true experts in their field, it’s increasingly common for patients to be authors of PLSPs. When thinking about the authors of a PLSP, can you include any patients who fit the International Committee for Medical Journal Editors (ICMJE) authorship criteria and also provide a truly unique patient perspective on the subject?
Is it plain enough?
Writing in non-technical language is harder than it sounds. Often, writer over-familiarization with the content leads to complex terms being included in PLSPs, creating a barrier for some readers to understand the content. As discussed, it helps to have a patient or non-expert, or even a colleague not familiar with the content, read the PLSP – they can be the judge of whether the content is ‘plain’ enough.
A picture is worth a thousand words
Including simple visuals to support written text promotes health literacy best practices, helping users with limited literacy skills to understand the content. With PLSPs, how the article looks is just as important as the content being discussed. All PLSPs we publish are typeset using a bespoke template where graphics and icons are very much part of the article. When drafting a PLSP, think about ways to include images within the flow of the text rather than citing separate figures or tables.
Think outside the graph
While Kaplan–Meier curves are often standard in scientific articles, they are tricky for some researchers to understand, let alone patients. Rather than replicating the graph in a PLSP and trying to explain the data, think about what data you want to show. Can you just highlight certain data points (without cherry picking data of course!) and show them using a simplified image or graphic? Our graphics team are experienced in visualizing data this way and can advise on how to represent your data should the PLSP be submitted for publication in one of our journals.
Make it even more accessible
Accessibility to PLSPs begins with publishing the article itself. All PLSPs should be made free to read, either by publishing the article open access or by making it free to access if published as supplementary material alongside a publication. But other ways to make PLSPs accessible should also be considered. Digital enhancements complementing scientific articles have never been more important, helping time-constrained researchers understand and learn about the findings discussed. The same principles apply for patient readers. Summarizing a PLSP in a short animated video helps patients further their understanding of the content.
For many readers, English is not their first language. Therefore, why not create translated versions of the PLSP that can be made available alongside the original English language version? Many publishing platforms, including our own, can host any form of supplementary material, such as translations, that are free to download and read.
Discoverability is key
It’s all well and good publishing a well-designed and well-written PLSP, with an engaging and informative title that readers can discover on search engines like Google, but readers are also discovering PLSPs through other resources. Think about sharing your PLSP on social media, where many patients seek information through Twitter posts or Facebook support groups. Often publishers can use their own social media accounts to post about a new PLSP, ensuring any sponsor remains ‘hands-off’ from the process. Are there any relevant patient organizations you can also inform about your PLSP? Again, independently of the author or sponsor, publishers can reach out to these organizations who can in turn let patients know about the publication.
As the inclusion of patients in medical research evolves, so will the publication of PLSPs. We are already considering different formats of PLSP, such as video-only or unique plain language articles (not summaries!), intended, from the outset, to be understood by a lay audience. Where will our PLSP initiative be 1 year from now? Who knows, but it’s certainly going to be interesting getting there!
References
1. Rosenberg A, Baróniková S, Feighery L et al. Open Pharma recommendations for plain language summaries of peer-reviewed medical journal publication. Curr Med Res Opin 2021. DOI: 10.1080/03007995.2021.1971185.
2. Tap W. ENLIVEN study: Pexidartinib for tenosynovial giant cell tumor (TGCT) Future Oncol 2020;16:1875–8.
3. Dormer L, Walker J. Plain language summary of publication articles: helping disseminate published scientific articles to patients. Future Oncol 2020;16:1873–4.
Joanne Walker is Head of Publishing Solutions and Laura Dormer is Editorial Director, both at Future Science Group. Joanne and Laura co-developed Future Science Group’s PLSP initiative and have participated in several PLS projects, including the PLS of Publications Workshop run by Envision Pharma, the ‘How-To Guide for the development and dissemination of plain language summaries of peer-reviewed publications and conference presentations’ co-created by Patient Focused Medicines Development (PFMD) and the CISCRP webinar on ‘Plain Language Summaries of Publications (PLSP)’. You can discover more about Future Science Group’s PLSP initiative via the website https://www.plainlanguagesummaries.com/ or by following them on Twitter at @Plainlang_FSG.
