Plain Language Summaries

Standalone, citable summaries published in the Future Science Group journals written to be understood by a lay audience

Joanne Walker

Plain language summaries at ISMPP EU 2023: Out of sight, out of mind?

In this blog post, Jacqui Oliver (Envision Pharma Group) and Adeline Rosenberg (Oxford Pharma Genesis) talk about two of their posters that were presented at the 2023 European Meeting of the International Society of Medical Publication Professionals (ISMPP):

  1. Plain language summaries: journal intent is just the first step…
  2. Social media metrics of plain language summaries on Figshare

Why was the research needed?

Plain language summaries (PLS) are valuable to a broad range of readers, including patients and healthcare professionals, seeking understandable and accessible information [1–5]. The value of PLS is recognized across the broader industry and journals are increasingly publishing and indexing PLS [6, 7]. Online, there are a range of external platforms that journals use to host and index PLS, such as Figshare and PubMed. Despite these efforts, the extent to which peer-reviewed publications are including PLS and how easy it is for readers to find them is not clear. Both posters sought to answer the broader question: how visible are PLS?

What did we do?

Jacqui:  We identified journals that accepted PLS using the Enhanced Publication Options Navigator. For each journal, we looked at how many of the 20 most recent articles included a PLS. For articles with a PLS, we assessed how visible the PLS was relative to the publication and if the PubMed record included the PLS.

Adeline: We wanted to find out if PLS on Figshare are being shared on social media blogs and news sites. We identified all the articles published in Adis journals that had used Figshare to host their PLS. We compared the metrics associated with the full articles and those associated with the linked Figshare PLS locations. We focused on metrics from the ‘Twitter’, ‘Facebook’, Blogs and ‘News’ categories. 

What did we find?

Jacqui: We identified 112 journals that accepted PLS. Around two-thirds (67%) of these journals had not published a PLS within the last 20 articles. Of the 2240 articles we assessed, only 1 in 20 (5.8%) articles included a PLS. Almost a quarter did not identify the presence of the PLS on PubMed.

Adeline: Overall, we found 54 articles in Adis journals that hosted their PLS on Figshare to use in our analysis. From the metrics, we discovered that 59% (32) of the full articles had any metrics available, whereas only 2% (1) of the corresponding PLS on Figshare had any metrics.

What do these results mean and what can we do about it?

These posters show that there are missed opportunities to (1) provide PLS to make information accessible to non-specialist readers, and (2) where PLS are being published and hosted or indexed on platforms such as Figshare and PubMed,  to make them findable by their intended audience. To help address these gaps, publishers could:

  • encourage authors to include PLS in publications
  • share PLS on social media
  • make use of microsites and press releases to increase awareness of PLS
  • ensure they tag PLS correctly on PubMed
  • use metadata strategically so that PLS appear in online searches
  • consider establishing a searchable cross-publisher hub for hosting PLS

Access the posters here


Acknowledgements

Jacqui and Adeline would like to thank their co-authors on their posters.

Plain language summaries: journal intent is just the first step…: Andy Shepherd (Envision Pharma Group), James R Chester (Envision Pharma Group and University of Manchester), Lauren Manning (Envision Pharma Group and University of Manchester) and Dawn Lobban (Envision Pharma Group).

Social media metrics of plain language summaries on Figshare: Caroline Halford (Springer Healthcare), Chirag Jay Patel (Cactus Communications), Michelle Adams (Pfizer), Andy Shepherd (Envision Pharma Group), Mike Gregg (Taylor & Francis Group), Joanne Walker (Becaris Publishing) and Russell Craddock (Parexel International) on behalf of the ISMPP Social Media and Web-based Metrics Working Group.

[1] Rosenberg A et al. Curr Med Res Opin. 2021;37(11):2015-2016. Available at: https://www.tandfonline.com/doi/full/10.1080/03007995.2021.1971185  

[2] Lobban D et al. Curr Med Res Opin. 2021;38(2):189-200. Available at: https://www.tandfonline.com/doi/full/10.1080/03007995.2021.1997221

[3] Lobban D et al. Poster presented at the 2022 European Meeting of ISMPP. Available at: https://doi.org/10.6084/m9.figshare.20059523.v1  

[4] van den Broek R et al. Poster presented at the 18th Annual Meeting of ISMPP. Available at: https://www.tandfonline.com/doi/full/10.1080/03007995.2022.2055262

[5] Edgell C and Rosenberg A. Curr Med Res Opin. 2022;38(6):871-874. Available at: https://www.tandfonline.com/doi/full/10.1080/03007995.2022.2058812

[6] DeTora LM et al. Ann Intern Med. 2022;175(9):1298-1304. Available at: https://www.acpjournals.org/doi/10.7326/M22-1460

[7] Gattrell W et al. Poster presented at the 2022 European Meeting of ISMPP. Available at: https://www.plainlanguagesummaries.com/peek-behind-the-research-prevalence-and-characteristics-of-plain-language-summaries-indexed-in-pubmed/

The impact of fibrodysplasia ossificans progressiva (FOP) on patients and their family members: results from an international burden of illness survey

The first international fibrodysplasia ossificans progressiva burden of illness survey was carried out to learn more about the physical impact, quality of life impact, and economic impact of the condition on people with FOP and their families. This new plain language summary in Future Rare Diseases discusses the findings from this survey.

Read the full article here.

The original article on which this summary is based is called ‘The Impact of Fibrodysplasia Ossificans Progressiva (FOP) on Patients and their Family Members: Results from an International Burden of Illness Survey’ and was originally published in the journal Expert Review of Pharmacoeconomics & Outcomes Research. The original article can be read here.

Plain language summary of a study looking at the age at diagnosis and time to start of treatment in individuals with mucopolysaccharidosis type I (MPS I)

This new plain language summary in Future Rare Diseases discusses a study using data from the MPS I Registry that looks at the age when individuals were diagnosed with MPS I and the time taken for them to start treatment with enzyme replacement therapy or hematopoietic stem cell transplantation.

Read the full article here.

The original article on which this summary is based is called ‘Improvement in time to treatment, but not time to diagnosis, in patients with mucopolysaccharidosis type I’ and was originally published in the journal Archives of Disease in Childhood. The original article can be read here.

Plain language summary of the International Collaborative Gaucher Group Gaucher Risk Assessment for Fracture score in people living with Gaucher Disease Type 1

Recently, researchers have developed a new assessment that could help them predict if people with Gaucher Disease Type 1 who were receiving ERT might have a fracture in the future. This plain language summary presents the findings from the original publication of the analysis.

Read the full article here.

The original article on which this summary is based is called ‘The International Collaborative Gaucher Group GRAF (Gaucher Risk Assessment for Fracture) score: a composite risk score for assessing adult fracture risk in imiglucerase‑treated Gaucher disease type 1 patients’ and was originally published in the journal Orphanet Journal of Rare Diseases. The original article can be read here.

Plain language summary: How the Pompe Registry is helping to identify and explain gene changes in Pompe disease

The Pompe Registry is the largest worldwide database that collects medical information on
people with Pompe disease. This plain language summary discusses a recent publication analysing data from the Pompe Registry looking at gene changes that can result in Pompe disease.

Read the full article here.

The original article on which this summary is based is called ‘GAA variants and phenotypes among 1,079 patients with Pompe disease: Data from the Pompe Registry’ and was originally published in the journal Human Mutation. The original article can be read here.