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Making Sense of Research Papers

This post was prompted by the following tweet on 20th October 2016:-

 blcomp-pic1CC-BY

BACKGROUND

This got me thinking again about this issue. I don’t think this issue relates solely to open access papers, but to any science/research papers. As such, let’s leave the open access issue aside (where possible) for the purposes of this post.

From a personal point of view, as a non academic, I started reading research papers back in 2001 during my time in the Charitable Sector. For the organization in question, we had three fully qualified Scientific Advisors (at any given time) who were always to hand to assist us Trustees and Members when it came to technical issues where we were out of our depth.

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Given the fact that we were producing monthly newsletters which always included information on the latest research in the field in question, their input was invaluable.

As matters progresses, I started to consume more and more information, especially after one of our Advisors made me aware of PubMed ! Several months in, I was requesting dozens of PDFs per month either for personal use or to pass on internally to my colleagues. At times, rather than pestering our Advisors on every occasion, if I couldn’t understand a paper, emailing the author (or calling them) usually did the trick.

I then built up a large database of researchers in various fields (in this case, namely Neuroscience and Glycobiology) and over time, I/we had an extensive field of expertise at our virtual fingertips.  This was all in a time period before social media I should add !

Moving on several years.

spinning-clock

On the internet there is a lot of information. Good, bad and ugly. In terms of the topic of this post, there are LOADS of Patient Forums online. Personally, I am only antiquated to a handful. Cue an earlier post, The International Gang of Four (IGF).

I recall I phrase I used from someone else in a comment I left on a PLOS paper which read:-

Articles in Science Journals do demand some effort from the reader; it’s not like reading the newspaper!

When I thought about that comment again, it sort of made me think of a partially related topic.

Patients would be confused if they were to have free access to the peer-reviewed medical literature on the web

Without being pejorative or elitist, I think that is an issue that we should think about very, very carefully, because there are very few members of the public, and very few people in this room, who would want to read some of this scientific information, and in fact draw wrong conclusions from it […] Speak to people in the medical profession, and they will say the last thing they want are people who may have illnesses reading this information, marching into surgeries and asking things. We need to be careful with this very, very high-level information.

Oral evidence to inquiry, March 1st 2004, John Jarvis (Managing Director, Wiley Europe)

Response

This position is extremely elitist. It also defies logic. There is already a vast amount of material on medical topics available on the Internet, much of which is junk. Can it really be beneficial for society as a whole that patients should have access to all the dubious medical information on the web, but should be denied access to the scientifically sound, peer-reviewed research articles?

In some cases, to be sure, comprehending a medical research study can be a demanding task, requiring additional background reading. But patients suffering from diseases are understandably motivated to put in the effort to learn more about their conditions, as the success of patient advocacy groups in the USA has shown. Patients absolutely should have the right to see the results of the medical research that their taxes have paid for.

SOURCE

In 2011 after giving an invited talk at the conclusion of a JISC funded project entitled Patients Participate!, I found out about the excellent Sense About Science.

I then put out the following tweets this morning:-

Responses thus far…

Going back to the opening tweet:-

Lay summaries, supplements, primers: Scientists (and journals) strive to make science accessible to public (and each other)

lay-summaries

Petition calls for lay summaries in ecology journals

Simplified synopses of research papers could help to bridge the gap between scientists and the public.

PLOS Medicine This Journal provides an Author Summary for all if not most papers.

Some other resources I found last night after a quick search:-

STM Digest will feature lay summaries of science papers with societal impact

Opinion: Lay summaries needed to enhance science communication

That last link takes you to the Access to Understanding homepage.

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Access to Understanding is a collaboration uniting organisations that want to improve public understanding of the latest biomedical and health research findings.

Our mission is to bridge the gap between public access to biomedical research articles online, and the wider understanding of the findings described in those articles.

Although online, open access to current research is increasing, much of this information is only accessible to a niche audience, usually just other scientists, due to the use of highly technical language. Access to Understanding aims to make scientific knowledge truly accessible by championing clear, concise and balanced summaries of research findings making them understandable to non-specialists. We are doing this by:

  • Providing guidance for anyone who is planning to write about biomedical research for a non-specialist audience.
  • Promoting online resources that support the use of plain-English writing in biomedical and health research.
  • Encouraging early-career scientists to write about research in an accessible way through our Access to Understanding science writing competition and giving anyone the opportunity to vote in our People’s Choice Award.
  • Working with like-minded organisations and individuals who want to help us bridge the gap between access and understanding – find out more here.

If you would like to help us achieve these goals, please contact us and tell us how you can help.

Access to Understanding ran an annual Competition from 2013 – 2015.

Here you can find the winners and commended entries from each year of the Access to Understanding science writing competition.

It was an honour to have been asked to act as one of the judges over 2013 – 2014 competition. Here is a video summary this of at the British Library (BL) which I think summarizes all of the above in context.

This entry was posted on October 21, 2016 at 3:22 pm and is filed under Lay Summaries, patient advocacy, Research Papers. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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