Cartoon from 2014 by @HildaBast, Chief Editor of PubMed Health & PubMed Commons
We’ve often written here about open access medical literature (freely available) vs “paywalled” journals. It’s a controversial subject, and this guest post is about an idea I’ve never heard of: a hackathon to explore the subject. (In the cartoon, “impact factor” refers to another controversial subject: how impressive science considers a journal to be.) Here’s the story; event info is at the end. It’s by Andrea Borondy Kitts, who will be one of the judges.
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Many of us — patients and caregivers — have been frustrated by the lack of access to peer reviewed medical content without paying exorbitant prices for even a single article. These articles often have the most credible medical information and the most recent research results. Not only do we not have access to these articles, but often neither do our physicians. In this day of empowered and activated patients using the internet to search for information on their condition(s) and partnering with their medical teams for true shared decision making, it is untenable that the most credible information is often out of reach for us – our lives may depend on it but we have to pay to see it.
My personal experience with this issue started as a caregiver for my late husband, Dan, as he struggled through lung cancer diagnosis and treatments. I found several pertinent journal articles on PLoS (which is “open access” – no fee) and emailed them to our oncologist with questions. He ignored these. At our next visit, I went in with a hard copy of one of these with notes and questions and handed it to him. He looked at the author list and commented that the lead author was previously his advisor. After that, we formed a partnership. I would survey the literature and beg, borrow and “steal” the journal articles I needed to help with decisions. I then provided summaries to him with treatment suggestions and he would review and facilitate the ones we all agreed were right for Dan. I still curate for this oncologist.
Can there be any question that there is value – real clinical value – in patients serving as “information bloodhounds” for busy physicians?
A New York Times article this month discusses the issues with access, noting that “…only scientists at really big, well-funded universities in the developed world have full access to published research.” The article goes on to describe several initiatives underway to improve access, including legislation to make government funded research freely available after a 6 month embargo period, and that many private foundations will now only fund research intended for open access publication.
There is another initiative to address this issue, a medical society event happening in Washington DC on May 14 and 15 this year. The Journal of the American College of Radiology (JACR), in concert with the American College of Radiology (ACR) is holding a hackathon to address the need for patient access to medical journal articles and content experts. Teams comprised of patients and patient advocates, IT experts and enthusiasts, and physicians will develop novel approaches using technology to address this unmet need. Mentors and judges for the event include patients, patient advocates, IT experts, physicians and the publisher Elsevier. There will be $8000 in cash awards distributed to the winning teams and an opportunity to work with key leaders from the JACR, ACR and Elsevier.
You can help in two ways.
- Sign up for the event and come help develop the solution. No expertise needed. http://jacr-hackathon.com/. It will be an exciting event.
- Share your personal story how medical journal articles made a difference in your medical treatment and/or outcome or how the lack of access has impacted you. Stories will be posted on the website anonymously. Please e-mail to borondy@msn.com
My vision is that downloading a medical journal article will be as easy as downloading a song from iTunes. Help us make that happen.
I too want push-button access to all the articles that might be of use to patients and caregivers. With some “begging, borrowing, and stealing,” as the author notes, most can be had. What really interests me in the article though is curation, not access. In no way can any one person sift through potentially relevant publications, which are increasingly in double digit percentiles year on year, without that all important service. Let alone read them. I’d love to see _that_ problem hacked!
Perhaps one approach would be to “copy” what iTunes has done – go right to the source of the article, the author.
I am sure it more complicated than that, but large groups of patients/patient advocates might/should be able to “shame” researchers into allowing their work to be shared for the “good of the patient”.
Just like one can now buy a song for $0.99, perhaps authors would be open to creating online journals where the same can be done?
I know some people have proposed exactly that. I imagine that will be one of the ideas tossed around in the hackathon.
Anyone else know much about this idea?