Clinical data, reporting and copyrights—a potentially disruptive (or facilitative) technology is on the horizon

Clinical data, reporting and copyrights—a potentially disruptive (or facilitative) technology is on the horizon

Douglas W. Blayney, MD, FASCO

Jan 18, 2009
We had a paper accepted for publication in JCO, and as a condition of publication we authors are required to transfer the copyright to ASCO, JCO's publisher. This is a similar policy to that of most scientific journals. Filling out the "Transfer of Copyright" form for JCO brought to mind a lecture (more information here) this past week from John Wilbanks, an evangelist for the non-profit Creative Commons.

ASCO, as publisher of JCO, then controls the copyright, and grants permission for further use as described here. ASCO has a relatively liberal licensing and permissions policy, but has a legitimate need to protect the considerable investment it makes in the peer review and publishing process, about which more later.

Our paper, describes a study of University of Michigan patients who received solid organ (kidney, lung, etc) transplants who developed post transplant lymphoma. While this association has long been recognized, we had some new findings, which we first presented as an abstract. We showed that patients who develop these lymphoma have survival indistinguishable from non-immunosuppressed patients when treated with chemotherapy and rituxumab, that most of these lymphomas are large B-cell (we saw no follicular lymphomas), and that the these lymphomas rarely responde to reduction in immunotherapy alone. We have the second largest series published, so we have the power of relatively large numbers to help bolster our conclusions. I'll try and show how an EHR-created and amalgamated database might facilitate findings like this. But first, I digress...

Current Copyright

Current copyright is binary -- works are either copyright protected or are in the public domain. Copyrighted works are owned by the copyright holder. One can make copies and use copyrighted works only with license from the owner, after getting the owners permission, and often after paying a fee. Copyright protection lasts a long time -- 99 years after the death of the creator. Certain "fair use"exceptions exist, some of which are for personal use and the production of a limited number of copies for educational use. The copyright protects the integrity of the idea production and dissemination process, but does not protect the ideas produced.

The Potentially Disruptive Technology

The Creative Commons concept has more gradation than the current binary copyright system. The Creative Commons licenses enable people to change their copyright terms from the default of “all rights reserved” to “some rights reserved.” The next few paragraphs are taken from their website, and may be more than you want to know, but describes the gradations from non-restrictive to most restrictive (feel free to skip to the next heading):

Attribution: You let others copy, distribute, display, and perform your copyrighted work — and derivative works based upon it — but only if they give credit the way you request.

Attribution, Share Alike You allow others to distribute derivative works only under a license identical to the license that governs your work.

Attribution No Derivatives This license allows for redistribution, commercial and non-commercial, as long as it is passed along unchanged and in whole, with credit to you.

Attribution Non-Commercial This license lets others remix, tweak, and build upon your work non-commercially, and although their new works must also acknowledge you and be non-commercial, they don’t have to license their derivative works on the same terms.

Attribution Non-Commercial Share Alike This license lets others remix, tweak, and build upon your work non-commercially, as long as they credit you and license their new creations under the identical terms. Others can download and redistribute your work just like the by-nc-nd license, but they can also translate, make remixes, and produce new stories based on your work. All new work based on yours will carry the same license, so any derivatives will also be non-commercial in nature.

Attribution Non-Commercial No Derivatives This license is the most restrictive of our six main licenses, allowing redistribution. This license is often called the “free advertising” license because it allows others to download your works and share them with others as long as they mention you and link back to you, but they can’t change them in any way or use them commercially.

You get the idea. Creative Commons views their licenses not as an alternative to copyright. Their licenses work alongside copyright, so you can modify your copyright terms to best suit your needs. One example is flckr the photosharing service, (example here) which has added a feature to allow members to post photos and share allow others to use them with the Creative Commons licensing features.

So, why is this important, and what implications does this have for an EHR?

The Threat to Peer Review: First of all, Jason Knight, our medical student-first author, will likely expect to use this publication as one step on his road to academic promotion. Promotion committees in academic institutions use the count of peer reviewed publications as a way of keeping score. The peer review process, when done well, is very labor intensive (it takes a lot of effort on the part of the reviewer), is largely thankless (but thank you to all of you who help ASCO in this effort), and is expensive to conduct. Subscription fees and copyright fees are meant to partially support the peer review process for JCO and for other journals.

You might imagine other mechanisms to inform the medical community of our results which do not go through the traditional journal publication process, and which are not available to help keep score. If Jason and our team were to publish a series of timely blog posts describing our work as we progressed, the impact of each of these posts is likely to be lost on a future promotion committee. Further, the absence of peer review is likely to leave most readers confused about the significance of the work. So, the peer review publication process needs to survive in some form to facilitate academic promotion, and needs to be supported by revenue from some source.

The Opportunity to Create and Share Databases to Improve Patient Care: One of the findings of our study was that the newer immunosuppressive regimens seem to carry a higher risk of PTLD. It took Jason and the others who created the various databases a tremendous amount of effort to generate these findings. One raison d'être for EHRs is to facilitate such data mining, and facilitate generation of best practices, not by the cumbersome method of clinical trials or chart review, but by observing, capturing and mining data from everyday practice on every patient. If these databases are copyrighted, then there is a huge hurdle to data sharing. The graduated permission structure of Creative Commons may be one approach to preserve the integrity of the original work while allowing derivative works (i.e. data sharing and data mining) to proceed. One can imagine the sharing of databases for scientific or quality improvement purposes under an "Attribution No Derivatives" license, which would allow amalgamation, mining and potentially commercial distribution with sharing of the proceeds of such a database. I think this could be a great use of this potentially disruptive technology.

For my purposes, I attach my lecture notes.Wilbanks 13 Jan 2009 Lecture Notes.pdf


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