Open Parkinson’s – Parkinson’s UK pushing (and funding) openness #brilliant

Just a quick post here on my new theme of Openness in Parkinson’s research in honor of my father in law Carlos Benito who is, unfortunately, dying from this disease.  I did a google search for open access and Parkinson’s to see whether any organizations out there were pushing for more openness.  And the good news is that there are a few.  One I highlight today Parkinson’s UK.  I highlight them because of their position on Open Access publishing: Parkinson’s UK – Open access publishing – (formerly Parkinson’s Disease Society)

From their site:

“We expect authors of research papers to maximise the opportunities to make their results available for free.”

But that is not all – they do offer to help support OA publishing fees on top of the research money they dole out.  Truly putting one’s money where one’s mouth is.

Their full policy can be found here and they summarize the policy in the five following bullet points:

  • We expect authors of research papers to maximise the opportunities to make their results available for free.
  • We require electronic copies of any research papers that have been accepted for publication in a peer-reviewed journal, and are supported in whole or in part by Parkinson’s UK funding, to be made available through PubMed Central (PMC) and UK PubMed Central (UKPMC). This must be as soon as possible and in any event within 6 months of the journal publisher’s official date of final publication.
  • We’ll provide grantholders with additional funding to cover open access charges, where appropriate, (up to 2 years after the end of the grant) in order to meet our requirements.
  • We encourage (and where we pays an open access fee, require) authors and publishers to license research papers such that they may be freely copied and re-used (for example for text and data-mining purposes), provided that such uses are fully attributed.
  • We affirm the principle that it is the intrinsic merit of the work, and not the title of the journal in which an author’s work is published, that should be considered in making funding decisions.

It is really quite awesome actually – they even focus on openness and not just on “no cost” access which many organizations do not seem to understand.  Any and all medical funding organizations that do not have a policy on open access should check out theirs.  Way to go Parkinson’s UK.

Also see:

Open Parkinson’s – need for more progress on Open Access for papers on Parkinson’s

I have a new aspect of open science I am concerned about. It is research on Parkinson’s. This comes from having a family member with Parkinson’s who is not doing so well. And I am getting frustrated with trying to read up on some Parkinson’s related research but hitting a paywall for much of it. Uggh. This is so incredibly annoying and, in many ways, immoral. If we want to speed up the work towards cures, treatments and prevention strategies, we need to share more broadly everything we know about this disease. Yes, I know – publishing costs money. And yes, I know, open access and open science does not in any way solve all the problems associated with scientific and medical discovery and research. But I do know that openness can accelerate the pace of progress.
If you look at “openness” in relation to Parkinson’s studies it is pretty disappointing. For example, of 60,400 publications that come up in Pubmed with a simple search for “Parkinson’s” 9053 have free full text available. That’s is just not enough. One thing that is interesting (and disconcerting) is what it looks like over time:

In some ways, there is good news here. The percentage of free text papers goes up over time from 2000-2009. But there is much bad news too. First – even in the best year, more than 70% of papers are not freely available. But perhaps more disconcerting, the percentage of freely available papers drops in 2010 and 2011. Why is this? I think most likely it comes from the delays in deposition to Pubmed Central that happen at many journals. So, it is good that some material gets out there, and apparently a higher fraction is getting out over time. But there is a big delay in the release of much of this material and the max percentage is still low. That is really unfortunate as the best way to catalyze scientific discovery to me is via rapid, open sharing. Imagine, for example, if Twitter posts were only available after 6 months. Useful? I don’t think so. What about weather information? Wait six months for a forecast? Sure, some aspects of scientific research do not need any input from others. But if papers are not important, then, why do we all fuss over them so much? That is because they contain knowledge, techniques, data, ideas, theories, and more. And it would be really better for all if everyone could have access to the full text of all such papers immediately.

Now mind you, I have only focused here on availability of free full text. There is another major issue in “open access” which is, well, openness. Openness of papers involves the rules on use, distribution and reuse. Many of the “free full text” papers in Pubmed Central have restrictions on how those papers can be used. The ideal to me is for the papers to be fully open such that anyone can redistribute them, repost them, take material from them, and use it in any way (with attribution). Why is this important? Well, it would allow anyone to create a Parkinson’s papers database, for example, with interesting search and discovery features. Or anyone could use a paper as part of a course, without having to worry about permissions. Or anyone could use material from a paper as part of a news story or blog post without getting into fights about fair use.
Now – there are some Parkinson’s related papers available out there outside of Pubmed, in institutional repositories and such. But these are not easy to find at this time. So in a way they don’t count for much.
I will be writing more about Open Science issues and Parkinson’s in the future. But for now I have a request. Anyone out there working on Parkinson’s please find a way to make your discoveries more freely and openly and rapidly available. I realize many/most of you are very passionate about this disease. I realize many of you work your tails off. And openness may be the last thing on your mind when working, struggling to get grants and make discoveries and deal with all your other job requirements and life issues. But even if you for some reason choose not to publish in an open access manner, at least post your papers on a website. Deposit them into repositories. Create a Mendeley account and post your papers there. Try and find a way to get them into Pubmed Central. Try to find ways to get your papers picked up by Google Scholar. Do something to increase the probability that your work will have an impact.
I will be writing more about open science and Parkinson’s in the future. Stay tuned.