Opening up the literature – some resources

There are at least two relevant issues here and readers might think of more (and hopefully share them!).

One – the public (however defined) pays for a great deal of research and one might argue that it’s only fair they get to access the output as well as having more involvement with what gets funded.

Two – do they actually want to read the scientific literature that’s currently behind a paywall and is it understandable even if they do?

Your jargon is too much for me

Medical research charities are probably more directly involved with the second aspect although the Wellcome Trust and Parkinson UK are explicitly in favour of open access – meaning that scientists who receive their funding must make their literature available in open access journals, or deposit a pre-publication copy in a university or other repository(see JULIET link below).

I (Jo) applaud any efforts to make information more available but providing access to the text isn’t quite the same as making it available to people who aren’t specialists.

People who have a health condition are often very knowledgeable about it and teach themselves a great deal about the condition and all the terminology that goes with it, but plenty find that they way in which papers are written is a barrier to understanding.

Patients Participate! is a a project run jointly by UKOLN, The British Library, AMRC (Association of Medical Research Charities), Sage Bionetworks, Digital Curation Centre and JISC in which patient charities who fund research can work with patients / carers and get them involved in the writing of lay summaries.
» See also “Patients Participate! Bridging the gap between information access and understanding

Edit: 17 May 2012
I asked on Twitter if there were any examples where there were lay summaries alongside original articles and heard back from Katherine Mathieson (@Kath_Math) who highlighted Ovarian Cancer Action’s lay summary of a 9-point plan for cancer research published in Nature Reviews Cancer and @gretahughson pointing me to lay summaries from aidsmap.

In terms of being able to get hold of articles in the first place Andrew Miller (@EndoMetabPub) pointed me to patientinform.org which lists a number of publishers and health organisations (including some from the UK) who are participating in a scheme to make research articles more available at low cost and who provide lay summaries.

Elsevier also makes a number of articles available at (relatively) low cost through its Patient Research programme. I shared this with the other members of the LinkedIn group for science communicators working in medical research charities.

Further reading
Research funders’ open access policies – SHERPA – JULIET

Might #AcademicSpring change the way in which journal articles (esp medical) are written? by Jo Brodie, Stuff that occurs to me blog (11 April 2012) – by me, wondering whether open access becoming the norm might alter the way in which articles are written (beyond bolt-on lay summaries but actually changing the way in which scientists communicate with each other if they’re aware that their potential audience is much larger than scientists).

Wider open spaces Times Higher Education (19 April 2012)
“Freely accessed papers are simply points in a constellation of scientific communication with the public, says Alice Bell”

Communication, communication, communication by Sylvia McLain, Occam’s Typewriter (19 April 2012)
– response to Alice’s THE post above.

The public interest argument must extend beyond open access…here’s a sort of lay summary by Simon Denegri (19 April 2012) – also in response to Alice’s post and highlighting that research funders need to involve patients in making lay summaries more readable.
“Public understanding of science will be marginally improved by better access to articles.  Yet, it could be radically improved if we also saw a commitment to the writing of a good lay summary of their work and to see this appear with every published article. For some reason, funders have seemed reluctant to pay serious attention to this as an important tool to understanding science, its dissemination and impact.”

The 21st Floor Science Wiki project The 21st Floor blog (29 May 2012) – providing a wiki space and template for anyone to write a lay summary of research, and put it in context.

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