Written by: Jennie McLean, PhD

Jennie is an Editorial Manager at Alpharmaxim Healthcare Communications

Given that most disease areas involve a wide range of non-expert interested parties, from patients’ caregivers and employers to non-specialist healthcare professionals (HCPs), it’s perplexing that medical research updates and results aren’t shared more widely to improve health literacy.

Medical communications have historically focused on targeting specialist HCPs with publications in a habitual manner, for instance with key results published at the next big congress and traditional primary and secondary manuscripts published in an appropriate target journal. The most effective medical communication campaigns are tailored to challenge specific stakeholder beliefs and behaviours; balancing science and strategy transforms data into a compelling, evidence-led, patient-centric story. It is important to consider disseminating the story to all relevant parties, not just specialist HCPs.

We strongly believe that Plain Language Summaries (PLSs) should be adopted more widely.

What are Plain Language Summaries and who reads them?

PLSs are short pieces of writing that communicate the significance of complex scientific research findings to different audiences in jargon-free, easy-to-understand language. The target audience is wider than you might think; it’s a common misconception that they are intended solely for patients. In fact, the PLS readership can also include non-specialist HCPs (and specialist HCPs who are in a hurry!), clinical trial organisers, academic researchers, caregivers, employees, patient advocacy groups and the press.

Why should we harness the power of Plain Language Summaries?

PLSs increase the reach of medical research, improve the effectiveness of communication campaigns and counter misinformation. PLSs give patients the knowledge they need to take ownership of their disease and its management; for example, by empowering them to start a dialogue with their HCP about new treatment options. PLSs also improve public engagement with science and medical research, thereby raising awareness of the value of research in this area. PLSs published in journals (e.g. simple summaries of complex scientific articles) can increase engagement with the original article.

Are Plain Language Summaries as plain as they sound?

Although journal PLSs tend to comprise paragraphs of text (usually around 250 words), you can create engaging alternative formats such as Q&As, infographics, videos or audio summaries. Each journal tends to have specific guidelines on the permitted format and where it will be presented.

Is a Plain Language Summary the same as a lay summary?

No. Lay summaries are different from PLSs as they tend to be developed specifically for patients and caregivers, rather than for a wider audience.

It is also worth noting that the European Union Clinical Trials Regulation requires clinical trial result summaries to be developed in a format understandable to laypersons and made publicly available on their database;1 these are also completely different from PLSs.

Where are Plain Language Summaries published/found?

A PLS may be published as a stand-alone article in a peer-reviewed journal – usually as a summary of a previously published article (for example, about the clinical trial results for a particular treatment). This type of article is referred to as a PLSP (Plain Language Summary Publication). Alternatively, the PLS could be published as part of the article it summarises; a plain text summary will tend to appear between the article abstract and the article introduction, whereas a visual multimedia PLS may be published as online-only supplementary material as a feature on the journal website.

Some journals publish PLSs with the same licence as the article; others publish them with an Open Access licence so they are freely available, even if the main article is behind a paywall. eLife, an organisation that works to improve research communication, has compiled a list of journals that publish PLSs.

PLSs can also be published at scientific congresses, or they are shared directly with patient advocacy organisations and on social media.

A change in attitude and improved accessibility to Plain Language Summaries is long overdue

Some journals strongly recommend the inclusion of PLSs, while some don’t permit them at all. Confusingly, different terminology is used when referring to these summaries (for example, patient summary, lay abstract, patient summary, plain English summary, clinical trial PLS, patient education handout and lay language summary). The variation in terminology means they are difficult to locate (for professionals, let alone patients!). It is important that we understand the different terminologies used to describe a PLS and be as consistent as possible in our own communications.

Although some PLSs are indexed in publicly searchable databases such as PubMed, it is incredibly difficult to find them, even for the initiated. For many journals, only plain-text (continuous prose) PLSs are indexed in PubMed. Given that patients tend to search via Google for information, they are having to rely on patient advocacy groups to share relevant PLSs with them.

We recommend communicating widely about PLSs with clients and authors to spread the word and increase their uptake!

Initiatives promoting awareness of Plain Language Summaries

There are several initiatives working towards improving PLS awareness and accessibility, such as the International Society for Medical Publication Professionals PLS Perspectives Working Group, The European Medical Writers Association and the Patient Focused Medicines Development initiative. We eagerly await the imminent Good Publication Practice (GPP4) guidelines in the hope that they include recommendations for PLSs.

Reference

1. Barnes A, Patrick S. Lay summaries of clinical study results: An overview. Pharmaceut Med 2019;33(4):261–268

Alpharmaxim’s recommendations to improve the awareness and accessibility of Plain Language Summaries

  • Medical communication campaigns should include PLSs to ensure that the patient-centric story is being understood and appreciated by all non-specialist stakeholders
  • More journals should allow PLSs and actively encourage their inclusion
  • Accessibility needs rethinking; a central repository that can easily be found via Google would be ideal
    • Journals could improve indexing of PLS in PubMed so that the more visual PLSs, which are more likely to be understood, are cited
    • PLSs should be shared more widely via social media, within The Association of the British Pharmaceutical Industry (ABPI) guidelines
    • Journal approaches to the inclusion and dissemination of PLSs should be standardised
  • Boost awareness by educating patients, HCPs and pharmaceutical companies on the different types of PLSs
    • Consistent terminology is vital to reduce confusion
  • Become advocates for the use of PLSs whenever appropriate and possible
  • Research into article metrics could generate a valuable evidence base to support greater uptake, if they show that inclusion of a PLS improves reader figures
  • Some journals offer the option to submit a PLS within a year of publication of the source article (however, the PLS will not be indexed in PubMed); it is worth revisiting recently published articles to ascertain if developing a belated PLS is possible

Alpharmaxim’s top tips for effective Plain Language Summaries

  • Consider the most appropriate format for the target audience and the most effective channel(s) of dissemination
  • Ensure that the patient-centric story is clear and understandable
  • If the PLS has its own title, also ensure that the words ‘Plain Language Summary’ are included so it is easy for people to find
  • Remember to bear in mind relevant client product lexicons and strategic scientific statements
  • Remain factual – no opinions
  • Ensure that an editor checks for typos, grammatical clarity and inconsistencies, keeping it simple, translatable and accessible for different countries and cultures
  • Draft manuscript PLSs in parallel with the main text so that all authors/relevant parties can review it, rather than developing it right before submission or after acceptance
  • Optimise readability
    • Avoid jargon and complex scientific words – draft the key information you want to include then decide if any words can be simplified
    • Consider one-word explanations for some words, for example ‘placebo (dummy)’
    • Minimise the use of words with ≥4 syllables
    • Remain respectful, e.g. ‘patients with diabetes’ rather than defining the patients by their disease (‘diabetic patients’) or ‘adults >65 years of age’ rather than ‘elderly patients’
    • Include a pronunciation indicator (e.g. in-dee-cay-tor) for complex words such as drug names (embed an audio clip if permitted)
    • Convey the significance of key findings without sounding patronising
    • Don’t just simplify the abstract
    • Keep sentences short
    • Avoid complex grammatical structures
    • Avoid abbreviations
    • Use an active voice to engage the reader (methodology is more suited to a passive voice)
    • Check content with a readability tool, e.g. the Flesch–Kincaid Readability Test
    • Ask a non-medical person who has no prior knowledge of the subject to review the PLS

At Alpharmaxim, we have extensive experience in helping speciality healthcare companies across the world communicate with healthcare professionals and patients, particularly in rare diseases. We are passionate about helping our clients tell their stories and fulfil their promises, and we aim to make a real difference to patients, families and healthcare professionals.

If you would like to know more, please visit our website www.alpharmaxim.com, or contact Sophie Jones on +44 (0)161 929 0400.