Recently, there has been an increased awareness of the importance of ensuring that medical research is accessible to patients and of the benefits of patient involvement in developing medical communications. Following her presentation at the 2022 European Meeting of the International Society for Medical Publication Professionals (ISMPP), The Publication Plan spoke to Laura Dormer, Editorial Director at Future Science Group, for a publisher’s perspective on developing journal content with and for patients.

 Future Science Group (FSG) publishes plain language summaries of publications (PLSPs), which are standalone, full-length summaries of original articles. How popular is this article type in terms of the number of submissions received and readership?

“When we published our first PLSP article in Future Oncology in 2020, our hope was that this new article type would help address a need to make the results of medical research more accessible to a broader audience. However, even we have been surprised at the enthusiasm with which the PLSPs have been received! At the time of writing, we have published 23 PLSPs, and have many more currently in progress for publication this year. Understandably, we have had (and continue to have) many conversations with people who are interested in publishing plain language content, but who are unsure how to go about this (including how to do so compliantly). However, these conversations are definitely now bearing fruit, and we are receiving new submissions on a weekly basis, which is great to see. PLSPs have also been well received by readers, and are among some of the most-read content in the issues in which they have appeared. The most read PLSP to date, on a pneumonia treatment, has received over 9,000 downloads in the first few weeks since publication.”

“PLSPs are among some of the most-read content in the issues in which they have appeared.”

A PLSP could cover an article published in a journal from another publisher. Have you encountered any issues with other publishers viewing the PLSP as a duplicate publication? Have you experienced any issues related to copyright when reproducing data in a PLSP?

“As part of our research when setting up our process for PLSPs, we looked into the International Committee of Medical Journal Editors (ICMJE) requirements for acceptable secondary publications, to ensure our articles met these conditions. There are 6 specific conditions that the ICMJE stipulate, and we provide guidance on how authors can meet these standards.

One of the ICMJE recommendations is to obtain approval from the publishers of the original publication; we therefore ask authors to contact the publishers to obtain this and recommend they do so as early in the development of the PLSP as possible. A further requirement of ICMJE is to inform readers of the original publication, and PLSPs always include a clear link back to the original paper, both in the article itself and on PubMed, for example. Not only does this fulfil the requirement, but it also drives interested readers back to the original publication if they want to learn about the study in more detail, so is valuable to the original publishers too.

So far, we have received very limited push back from the publishers approached, which is great; and generally, any conversations have been around explaining exactly what the PLSPs entail, as they are such a new offering.”

How important do you think it is to publish some form of plain language summary (PLS) for scientific papers and do you think they should be available for all publications? Which types of article do you think are most suitable as a basis for a full-length PLSP?

“I am very much in favour of publishing some form of PLS alongside research results wherever possible. The aim of plain language content is to provide access to the results of medical research to anyone who is interested in reading it. In many cases this is the very people (patients and patient carers) who have been directly involved in that research or who will be directly impacted by the results being presented. It only seems right to me to make this information accessible to as many people as possible.

But it’s not just patients and other members of the public that are finding PLS useful; another goal of our PLS content is to provide a resource to clinicians, nurses, and other healthcare professionals and decision makers. There is so much research published each year, and clear, easily digestible content is extremely helpful when it comes to keeping up to date with the latest findings. PLS content is also a valuable resource to aid patient–physician dialogue, and with patient centricity such an important goal for healthcare, PLS can really help drive this.

“It may not be realistic to publish PLS for every piece of research due to lack of resources; but I think these should be included wherever possible and at least for Phase III research results.”

It may not be realistic to publish PLS for every piece of research due to lack of resources; but I think these should be included wherever possible and at least for all Phase III research results. Certain pharmaceutical companies are really leading the way in terms of PLS content, and Ipsen recently committed to publishing, as a minimum, a 250-word PLS alongside all company-sponsored journal publications from human studies.

It is also important to remember that there are many different types of PLS: short-form text PLS (similar in length to a traditional article abstract), graphical abstracts, infographics, and PLS as supplementary materials, along with standalone PLSPs. The most appropriate type of PLS to develop for an article will depend on many things, from the time and resources available to develop it, through to the intended audience of the work.”

“The most appropriate type of PLS to develop for an article will depend on many things, from the time and resources available to develop it, through to the intended audience of the work.”

From your experience, what are the main difficulties faced when writing a PLS? Can you give any tips on how to convey complex information accurately without being patronising? Have any examples been particularly successful or well received by patients?  

“Writing in plain language is a real skill, and is a lot harder to do well than would first appear. The authors in our journals are very used to writing in a particular style, for peer-to-peer communication, and switching to appropriately pitched plain language can be challenging. In my experience, authors often still include language that is too technical (rather than the other extreme of appearing patronising)!

In terms of tips, new guidance is available (and more is on the way) to help in the writing of PLS, including the Patient Focused Medicines Development (PFMD)’s how-to guide for PLS co-creation (the development of which was described in a recently published article), and the PLS toolkit from Envision Pharma Group. There are also various online tools that can be helpful, such as a readability test to find the reading level of a piece of writing. We include a list of these resources in our PLSP author guidelines, which we are continually expanding to include the great resources coming out. It can also be useful to look at the different PLS that have been published by others, and see what appeals to you as a reader. We also recommend that our authors have their first draft read by a non-specialist before submission – whether this is a colleague in another department or even a family member, it is useful to see what feedback they have.

On a personal level, I find it useful when PLS include infographic-style elements and images as much as possible, as these help me to understand and remember information. All of our PLSPs include illustrations in this style, which have received very good feedback from reviewers and readers.”

“Writing in plain language is a real skill…authors often still include language that is too technical (rather than the other extreme of appearing patronising).”

Other options offered by FSG journals include graphical abstracts, infographics, and videos. How useful are these formats to patients? They may represent a significant investment for article authors or sponsors, as well as publishers supporting these formats, so what’s the evidence that these additions increase the reach or citations of the accompanying article?

“This is a good question, and something that we and other publishers are gathering data on all the time, as more and more of this type of content is published. Some great research presented at the 2022 European Meeting of ISMPP (Winter S et al. Do plain language summaries encourage readers to access your publication? A pilot study) found that the inclusion of PLS in open access articles led to increased readership of those articles compared with similar articles without PLS.

And while research of other enhanced content (such as graphical and video abstracts) is currently scarce, initial research (such as the following presentations from the 2022 European Meeting of ISMMP: Helson R et al. Enhanced content and social media activity: a case study from ASCO 2021; Hammad M et al. The effect of accompanying publication extenders on publication metrics in sets of similar oncology papers) also suggests these types of feature potentially extend the reach of the research, including via social media channels, for which they are ideally suited.”

Some publishers involve patients as peer reviewers. What benefits do patient peer reviewers bring and when do you think their input is most relevant?

“We include patient reviewers for our PLSP articles, and their feedback has been invaluable. Their input has really helped get the level of the content right (in some cases further simplifying the information, but in some cases adding further detail from the original publication). Interestingly, we also ask patient reviewers to review PLSPs outside of their scope of expertise, as we find this also aids with the overall review of the article in ensuring that the content is understandable.

As yet, we have not involved patient reviewers for non-plain language content to any extent, but I think this is also an interesting area to explore, particularly for clinically focused papers and trial results.”

Are there currently any patient editors at FSG or plans to appoint them in the future? What are the benefits to stakeholders including publishers and patients if patients are involved as journal editors? Are there any challenges or obstacles that need to be considered?

“As part of our process of setting up the PLSP project, we established an Advisory Panel of plain language experts, including many patients. Not only have the members of the panel been extremely helpful in the peer review of our plain language content, they have also been invaluable more broadly in establishing, and continuing to evolve, our PLS publication process. For example, they have provided useful feedback on how to make the review process of PLSPs work for patient reviewers and helped us to provide appropriate guidelines for those performing a review for the first time (which differ from the guidelines we provide to scientific peer reviewers).

Although FSG doesn’t yet have patient editors on our journal Editorial Boards, I know some other publishers have taken this step (and the journal Research Involvement and Engagement has a patient Editor-in-Chief), and it’s something we definitely plan to explore at FSG, particularly for journals that are beginning to include a lot of plain language content.”

In order for patients to benefit from medical research, materials must be accessible. What are the main barriers to patients accessing information? How important is open access in disseminating data to patients?

“I think there are two things to consider in terms of accessibility – the first is open access publication, and the second is the discoverability of the content. I think it is vital for PLS to be available freely or open access, as non-specialist readers are unlikely to have access to peer-reviewed journals via an institutional subscription, for example.

“I think it is vital for PLS to be available freely or open access.”

However, in order to access this content, readers first need to be able to find it. One of the advantages of the standalone PLSP article is that it is discoverable in its own right, and isn’t hidden within an article or a supplementary materials file. We recommend PLSPs include ‘plain language summary’ within the article title, so readers searching online or on indexing sites like PubMed can find them more easily.

But even before you consider how patients access the information, you need to ensure that they are aware that PLS exist in the first place. The more that publishers include PLS, the more those patients seeking information will know to look for them, and in turn they can spread the word to fellow patients that PLS exist to help them understand medical literature. It is also important that we, as publishers, are doing all we can to make sure other types of plain language content are discoverable, for example by making sure within-article PLS are tagged appropriately so that they can be found easily on PubMed. Many publishers are also starting to launch microsites on their regular journal platforms to pull plain language content into one location for all their journals, again making it easier for readers to find.”

Have you worked on any articles that have included patient authors? What are the potential benefits and challenges involved with patients authoring peer reviewed articles for scientific journals? 

“Along with authors of the original publication, we encourage the inclusion of patient authors in PLSPs wherever possible. Patient authors can add valuable insight to publications, particularly when they have been involved in the research. Beyond PLSPs, patient authors are also starting to be involved in other article types published in FSG journals, which is great to see.

“Patient authors can add valuable insight to publications, particularly when they have been involved in the research.”

I think one of the perceived barriers for patient authorship is the ability of patients to meet authorship criteria as per the ICMJE recommendations. However, if patients are involved from the start of planning a publication, these criteria can definitely be met. Another challenge is identifying patient authors on publications, as it is not always clear from their affiliation that they are a patient. We wrote about one potential solution for this in a recent article in Research Involvement and Engagement, and this has already led to some interesting conversations – definitely an area of further discussion! It is valuable to be able to identify patient authors, so we can track whether their inclusion is increasing over time and to provide more examples of where this has been done successfully.”

Finally, what more do you think should be done to encourage patient involvement in publications?

“The fact that we are talking about this more and more is a great step, and the more patients are involved in publications, the more examples others will have to follow. I think the important thing is to keep discussing this in as many places as possible – to shout about the successes, but also discuss the challenges and share tips and resources to help successfully involve patients more and more in the future.”

Laura is Editorial Director at Future Science Group. You can contact Laura at l.dormer@future-science-group.com or via LinkedIn.

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