Access to understanding MND research

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Brain Awareness Week  got off to a good start for me. Last night I attended the awards ceremony for a joint competition run by the British Library and Europe PubMed Central (Europe PMC). I met many people dedicated to explaining their research to non-experts and making the research available as widely as possible. Motor neurone disease research was included in the mix.

The aim of the ‘Access to Understanding’ competition was to promote two important aspects of all research – the ability to get details of new research findings – the reports written up as research ‘papers’ – to as many people as possible, as soon as possible. The second was the ability to be able to explain the same research to non-experts. Both of these are important to researchers and the possible beneficiaries of the research too.

About a year ago, MND Association grantee Professor Siddharthan Chandran and colleagues published an important MND research paper. It described a new way of studying why motor neurones die in MND. Using skin cells from patients with a specific form of the rare, inherited MND, the scientists were able to create living human motor neurones using ‘iPS’ technology. These motor neurones showed signs of developing MND – so they can be used to understand more about the disease. More information about this study and other stem cell research underway is available on our website.

Importantly the research paper describing these results is available for free on the research database Europe PMC. The paper was published ‘open access’ – an increasingly used method of making the results available / accessible to as great a number of people as possible.

The Association requires all new grantees to publish their research papers using the open access model. It’s part of our commitment to ensure that MND research knowledge is used and shared as widely as possible – moving us faster towards a world free of MND. More information on our open access policy  is available on our website.

The Europe PMC database contains the full details of over 2 million research papers. We and the other 18 funders of the database selected a total of nine research papers to be used in the competition. In January, scientists at an early stage in their careers were invited to choose one of these nine papers to write a non-expert summary.

Prof Chandran’s research paper was one of those selected. More than 400 entries were received, from researchers around the world. Over 30 were submitted summarizing the MND research paper. Colleagues at the British Library, Europe PMC and each of the research funders were involved in judging the entries. A final judging panel of six experts chose the winner and two runners up from a shortlist of 14 entries.

Nina Rzechorzek’s article ‘A window into brain disease is only skin deep’ was shortlisted from the MND articles submitted. You can read a copy of Nina’s article on our website (see ‘Summary of 2012 iPS paper’ link).

Nina Rzechorzek's article 'A window into brain disease is only skin deep" was shortlisted
Nina Rzechorzek’s article ‘A window into brain disease is only skin deep” was shortlisted

It is so easy to get drawn into the details and forget why the question was asked in the first place” she explained, when I asked her why she entered the competition. “A really great theory should make sense to everyone. I enjoy the challenge of getting people excited about neuroscience”.

I think it is essential for any scientist to be able to take a step back from their work, think about why it is important and communicate their objectives and findings to a wider audience. This is not about ‘dumbing-down’ complex ideas, but presenting them in a readily-digestible format to get the fundamentals of the scientific content across. The same rules apply in the clinic when explaining a disease process or treatment plan. Understanding empowers the listener/reader and builds trust.”

Many congratulations to Nina and the other shortlisted authors. In particular, congratulations to the overall winner, Emma Pewsey for her winning entry ‘Hip hip hooray’ describing a new study that might predict why hip fractures occur.

At the awards ceremony last night, we heard the top tips from the judges on what they were looking for in the competition entries and some though provoking ideas for promoting a greater scientific understanding for everyone.

And I do mean everyone! Last night it was acknowledged that researchers themselves don’t have to move too far from their specialist areas before it becomes difficult to understand. One of the judges commented: “it was only when I read the competition entries that I understood the science”.

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