“Is all the stuff about neurons necessary?” The development of lay summaries to disseminate findings from the Newcastle Cognitive Function after Stroke (COGFAST) study

Abstract

Plain English SummaryWhy did we do this study?It can be difficult for scientists to communicate their research findings to the public. This is partly due to the complexity of translating scientific language into words that the public understand. Further, it may be hard for the public to find out about and locate information about research studies. We aimed to adapt some scientific articles about the links between dementia and stroke into lay summaries to be displayed online for the general public.How did we do it?We collaborated with five people from a volunteer organisation, VOICENorth. They took part in two group discussions about studies reporting on the link between dementia and stroke, and selected four studies to translate into lay summaries and display on a website. We discussed the layout and language of the summaries and made adaptations to make them more understandable to the general public.What did we find?We were able to work with members of the public to translate research findings into lay summaries suitable for a general audience. We made changes to language and layout including the use of ‘question and answer’ style layouts, the addition of a reference list of scientific terms, and removing certain words.What does this mean?Working with members of the public is a realistic way to create resources that improve the accessibility of research findings to the wider public.Abstract Background Scientific research is often poorly understood by the general public and difficult for them to access. This presents a major barrier to disseminating and translating research findings. Stroke and dementia are both major public health issues, and research has shown lifestyle measures help to prevent them. This project aimed to select a series of studies from the Newcastle Cognitive Function after Stroke cohort (COGFAST) and create lay summaries comprehensible and accessible to the public. Methods We used a focus group format to collaborate with five members of the public to review COGFAST studies, prioritise those of most interest to the wider public, and modify the language and layout of the selected lay summaries. Focus groups were audio-taped and the team used the data to make iterative amendments, as suggested by members of the public, to the summaries and to a research website. We calculated the Flesch reading ease and Flesch-Kincaid grade level for each summary before and after the changes were made. Results In total, we worked with five members of the public in two focus groups to examine draft lay summaries, created by researchers, relating to eight COGFAST studies. Members of the public prioritised four COGFAST lay summaries according to the importance of the topic to the general public. We made a series of revisions to the summaries including the use of ‘question and answer’ style layouts, the addition of a glossary, and the exclusion of scientific jargon. Group discussion highlighted that lay summaries should be engaging, concise and comprehensible. We incorporated suggestions from members of the public i...

A protocol for co-creating research project lay summaries with stakeholders: guideline development for Canada’s AGE-WELL network

“…Defining the readership at the outset is critical to the development of an accessible and compelling lay summary because it determines the level of interest in an issue that a project seeks to address, the knowledge level about the issue, the language, or literacy, levels of the target readership, and the ultimate format of the lay Fig. 1 Process of co-creating project lay summaries with stakeholders summary [3,11,25]. For example, guidelines for target reading levels in lay summaries vary from Grade 6 to Grade 10 reading levels [4,11,26].…”

Aging, Informed Consent and Autonomy: Ethical Issues and Challenges Surrounding Research and Long-Term Care

“…As a consequence, on completion of research there remains the ethical challenges relating to a) the translation and dissemination of findings to all those who took part either directly or indirectly and b) the translation of research findings into practice and policy [66][67][68]. While not part of a standard approach for the translation of research findings there is the ethical challenge of translating research findings into an appropriate summary format for general public understanding and comprehension [69,70].…”

Development of a knowledge translation platform for ataxia: Impact on readers and volunteer contributors

“…Lay summaries have been demonstrated to make findings accessible and understandable to these non-specialist audiences [9][10][11][12]. This style of writing focuses on clear, engaging, and concise writing with the removal of technical jargon [13].…”

“…This style of writing focuses on clear, engaging, and concise writing with the removal of technical jargon [13]. Despite the clear benefit of plain language summaries to lay audiences, many scientists struggle to write effective lay summaries [12,14]. This difficulty is caused by many factors, including the vast difference in style between scientific and lay writing, the overabundance of scientific jargon, the heterogeneous nature of the lay audience, and fear of over-generalizing research findings [15].…”

“…The Snapshot article type was launched in April 2019 in response to early reader feedback requesting a deeper explanation of core concepts that appear in multiple SCAsource Summaries. They follow the best practices derived from COGFAST, where members of the public were consulted on what format and content they prefer in lay summaries [12]. Topics for Snapshots are generated from search terminology which brings readers to the website or through social media discussions.…”