How and why we create the lay summaries for TONiC/FINDeRS papers
We provide lay summaries because we know that our research papers may be of great relevance and interest to people with the condition who do not have a scientific or medical background. The abstract for each paper, published by the journal and included for each entry at https://www.finders-study.org/research-papers, is a summary which has been peer reviewed, i.e. independent experts have checked that it is accurate and fair. However, these abstracts are not written with the needs of lay people in mind.
We think it is important for us to explain how these lay summaries are created. This is because in science one is always watchful for ‘bias’, i.e. an error that distorts the results. Creating lay summaries could be a cause of bias: we have free rein over what we select to include in the summary, could exaggerate our findings, or even misreport them, hoping that readers would not compare the lay summary to the full paper and spot the bias.
Therefore for interested readers, we explain below exactly how we create the lay summaries, so you can judge our process for yourself. And of course, having read the lay summary you can read the full paper and make your own conclusions.
Our Lay Summary Group
The research papers on our website are the output from the analysis of the comprehensive data that our wonderful TONiC participants have helped us to collect.
Research papers are written for the medical and scientific community and can be challenging to read! Our Lay Summary Group assist us by reviewing lay summaries (a summary in every day English) of certain research papers that we can share on our website, alongside the original.
The Lay Summary Group do not actually meet as a group. They are a number of valued volunteers who read through the lay summary that we email to them, answer a survey and sometimes provide their own comments in response - we ask questions like 'Was the lay summary easy to understand?', ' Was the main research message clear?'
Please note that members of the group can't see each other's responses, nor can the TONiC team identify who the responses are from if members choose to remain anonymous.
Lay summaries are sent to the group regularly, but it is not necessary to respond on every occasion, if life is busy at that particular time.
We have around 50 members in the lay summary group, and would always welcome more members. In addition, the lay summaries have focussed on MS-related scientific papers to date, and we are very keen to get an Motor Neurone Disease (MND) Lay Summary Group underway. If this sounds interesting to you, please contact us here.
No improvement required, an interesting read.
Example Lay Summary, with some of the responses received (see research paper 67)
It was easy to understand the lay summary
There weren't any terms or phrases I didn't understand
The information I needed to understand the research was included without making me feel overwhelmed
The summary felt
accessible and inclusive to a wide range of people, regardless of background or knowledge of the topic
The length of the summary was just right
The main message of the research was clear
Personalised care from the outset of MS is the dream.....
This was a very good distillation of the complex full paper
This is very poignant, especially as neurotherapy services have been cut locally ....
The summary is much more easy to interpret than the original paper
No improvement required - an interesting read
..it would have more impact with some context explaining the reason, or the why, the study is being carried out..
...I also find it common sense that a plan at diagnosis should be individual because other disease/social status etc will have an effect on disease development....
..what tools can be used as a result of this research to group people on diagnosis so that it is done consistently across the whole country?
Research Papers which already have a lay summary can be seen on the 'Research Papers' page and can be identified by the blue 'Summary Available' symbol
Lay summaries are currently available for :