Why and how to publish aphasia-friendly research summaries

Hinckley, Jacqueline; El-Khouri, Clarisse

doi:10.1016/j.jcomdis.2023.106338

Cited by 5 publications

(1 citation statement)

References 29 publications

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“…Resources exist for creating Plain Language Summaries for various populations (for instance, Hinckley and El-Khouri, 2023, compiled resources to support researchers in the field of aphasia); however, no guidelines exist in the field of DLD. Stoll et al (2022) conducted a review of Plain Language Summary guidelines and found them to be heterogeneous in their instructions to users, highlighting the need to develop guidelines suited to the needs of different contexts.…”

Section: Existing Plain Language Summary Resourcesmentioning

confidence: 99%

How to create accessible research summaries for the Developmental Language Disorder community

Gasparini,

Ziegenfusz,

Turner

et al. 2024

Preprint

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Background: Eighty-five percent of medical research goes to waste, partly because it is not appropriately communicated to stakeholders. This represents a critical issue for the research community, especially because individuals who are impacted by research should be able to readily access that research. Making research findings accessible to key stakeholders is an important step in implementation science and in enabling research to have meaningful impact on communities. Plain Language Summaries are a tool to make research more accessible to individuals with communication disorders. While guidelines exist to support researchers to develop Plain Language Summaries for some populations, no such guidelines exist for the Developmental Language Disorder (DLD) community.Aims: We aimed to develop evidence-informed guidelines to support researchers to create Plain Language Summaries that are accessible for individuals with DLD, their families, and the broader community. This Discussion paper describes the development of these guidelines and how they may be implemented by researchers who conduct research on the topic of DLD.Methods: We drew from existing Plain Language Summary guidelines for other populations and knowledge of various barriers that may impact the DLD community’s ability to access scientific research. We used this knowledge to create guidelines for researchers to develop Plain Language Summaries of their research relating to the DLD population. This includes guidelines for creating written, visual, audio, and video summaries. We consulted with an adult with DLD, an implementation scientist, and a speech-language pathologist regarding the suitability of the guidelines.Main Contribution: The Plain Language Summary guidelines are publicly available via https://osf.io/ydkw9/. They include templates and examples, as well as suggestions for writing and visual styles. We encourage strengths-based language, seeking feedback from non-experts, and sharing the summaries on social media. We have also developed an online repository for researchers to disseminate their Plain Language Summaries via DLD advocacy groups.Conclusions: The Plain Language Summaries that researchers create using our guidelines can be used to disseminate research to the DLD community. This can facilitate science implementation and maximise the impact of DLD research. The Plain Language Summaries may also help individuals with DLD better understand the research that has been conducted about them. This may in turn support their engagement with services and empower them to partner in co-designing new research. Future research could explore the perspectives of the DLD community and researchers regarding the implementation of these guidelines.Plain language summary: A lot of research goes to waste. This is partly because researchers rarely share their results with the non-scientific community. People with communication disorders might find it hard to understand research papers. We made guidelines to help researchers explain their research to people with Developmental Language Disorder (DLD). We brought together existing advice on how to explain research in a clear way. We sought advice from people with different experience and perspectives, including an adult with DLD. The guidelines are at https://osf.io/ydkw9/. The guidelines include advice on how to add pictures to research summaries. We also explain how to make a video or podcast summarising research. We encourage researchers to share their research summaries on social media. This means their research can reach more people and can make a difference. It is important that people with DLD understand DLD research. This might help them to understand their diagnosis and take part in future research.

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Section: Existing Plain Language Summary Resourcesmentioning

confidence: 99%

How to create accessible research summaries for the Developmental Language Disorder community

Gasparini,

Ziegenfusz,

Turner

et al. 2024

Preprint

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

Pal,

Arnet,

Elger

et al. 2024

Patient

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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 am...

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Proceedings of the 2022 International Aphasia Rehabilitation Conference: The Engaged Community

Off,

Kim,

Devanga

et al. 2023

Journal of Communication Disorders

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Why and how to publish aphasia-friendly research summaries

Cited by 5 publications

References 29 publications

How to create accessible research summaries for the Developmental Language Disorder community

How to create accessible research summaries for the Developmental Language Disorder community

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

Proceedings of the 2022 International Aphasia Rehabilitation Conference: The Engaged Community

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