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.