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. 2024 Sep;17(5):493-518.
doi: 10.1007/s40271-024-00700-y. Epub 2024 Jun 15.

Practices and Barriers in Developing and Disseminating Plain-Language Resources Reporting Medical Research Information: A Scoping Review

Avishek Pal  1 , Isabelle Arnet  2 , Bernice Simone Elger  3   4 , Tenzin Wangmo  3
Affiliations

Practices and Barriers in Developing and Disseminating Plain-Language Resources Reporting Medical Research Information: A Scoping Review

Avishek Pal et al. Patient. 2024 Sep.

Abstract

Background: The intent of plain-language resources (PLRs) reporting medical research information is to advance health literacy among the general public and enable them to participate in shared decision-making (SDM). Regulatory mandates coupled with academic and industry initiatives have given rise to an increasing volume of PLRs summarizing medical research information. However, there is significant variability in the quality, format, readability, and dissemination channels for PLRs. In this scoping review, we identify current practices, guidance, and barriers in developing and disseminating PLRs reporting medical research information to the general public including patients and caregivers. We also report on the PLR preferences of these intended audiences.

Methods: A literature search of three bibliographic databases (PubMed, EMBASE, Web of Science) and three clinical trial registries (NIH, EMA, ISRCTN registry) was performed. Snowball searches within reference lists of primary articles were added. Articles with PLRs or reporting topics related to PLRs use and development available between January 2017 and June 2023 were identified. Evidence mapping and synthesis were used to make qualitative observations. Identified PLRs were quantitatively assessed, including temporal annual trends, availability by field of medicine, language, and publisher types.

Results: A total of 9116 PLRs were identified, 9041 from the databases and 75 from clinical trial registries. The final analysis included 6590 PLRs from databases and 72 from registries. Reported barriers to PLR development included ambiguity in guidance, lack of incentives, and concerns of researchers writing for the general public. Available guidance recommendations called for greater dissemination, increased readability, and varied content formats. Patients preferred visual PLRs formats (e.g., videos, comics), which were easy to access on the internet and used short jargon-free text. In some instances, older audiences and more educated readers preferred text-only PLRs. Preferences among the general public were mostly similar to those of patients. Psychology, followed by oncology, showed the highest number of PLRs, predominantly from academia-sponsored research. Text-only PLRs were most commonly available, while graphical, digital, or online formats were less available. Preferred dissemination channels included paywall-free journal websites, indexing on PubMed, third-party websites, via email to research participants, and social media.

Conclusions: This scoping review maps current practices, recommendations, and patients' and the general public's preferences for PLR development and dissemination. The results suggest that making PLRs available to a wider audience by improving nomenclature, accessibility, and providing translations may contribute to empowerment and SDM. Minimizing variability among available guidance for PLR development may play an important role in amplifying the value and impact of these resources.

Plain language summary

Plain-language resources (PLRs) can help people understand medical research information. This will allow them to make informed decisions about their health. However, PLRs vary in quality, format, and ways in which they are shared. In this study, researchers looked at how PLRs are made and publicly shared. They also studied what makes PLRs useful for the public and patients. Creating PLRs is not easy because of unclear guidelines on writing for the public. Using different formats and languages can make PLRs readable. Patients preferred PLRs as videos and comics. Older and educated readers liked text-only PLRs. The fields of psychology and oncology had the highest number of PLRs. Text-only PLRs were more common than digital or online formats. PLRs should be easily and freely accessible. Open-access journal websites, PubMed, third-party websites, email, and social media can be used to share PLRs. This study showed that PLRs can be helpful, but there are challenges in creating and sharing them. Good PLRs can inform patients and help them make better health-related decisions.

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Conflict of interest statement

AP is a full-time employee of Novartis Pharma AG. However, this work is independent of his employment and is part of his doctoral research at the Institute for Biomedical Ethics, University of Basel. IA, TW, and BE have no competing interests to disclose.

Figures

Fig. 1
Fig. 1
Flowchart of the search strategy and screening of articles according to PRISMA [32]. CT clinical trial, PLR plain language resource. Note: Identified articles were classified according to their topic (i.e., quality standards, barriers to development and dissemination, impact of PLRs) or their type (i.e., associated with a journal article, associated with a clinical trial, or a standalone PLR article in a different journal than where the original article was published)
Fig. 2
Fig. 2
PLRs (all and clinical trial-related) by publication year (A), top ten fields of study (B), and publisher (C); number of positive terms mentioned in the clinical trial PLR set (D). CT clinical trial, PLR plain language resource
Fig. 3
Fig. 3
Nomenclature used for plain language resources (full set). CT clinical trial
See this image and copyright information in PMC

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