In the past, I have sometimes used this blog to refer to articles from medical journals when I felt they had broad public interest. Sometimes, those articles have not been available to the general public because they were only available by subscription. From time to time, commentors to this blog have complained about this. I have let those comments go by without reply.
But, finally, I have had enough. I want to state this clearly and directly: When a respected medical journal issues a press release about a given article that has important public policy ramifications but does not make available the full text of the article, it is a bad thing. It inhibits full public understanding of the issue and makes us beholden to other people's interpretation of the article. It is inconsistent with the general principle of academic discourse and also is counterproductive in facilitating an informed debate on issues.
Here is today's example, from the Journal of the American Medical Association ("JAMA"). Last week, I received the following email from the AAMC (Association of American Medical Colleges):
The Feb. 13 issue of JAMA will include an article on a new study examining the status of institutional conflicts of interest policies at U.S. medical schools. The study was undertaken by the AAMC and Massachusetts General Hospital, and provides the first national data on medical school policies and practices for dealing with institutional financial conflicts of interest. Susan Ehringhaus, associate general counsel for regulatory affairs in AAMC's division of biomedical and health sciences research, is the lead author on the article.
This topic is clearly of great public interest and import, and so I asked the question of whether the full article would be available for reading upon publication. The answer I received today was, "No." Checking the JAMA website, I confirmed this. I can read the titles, the authors, and a short abstract. But I can't read the article and reach my own conclusions about the methodology employed, the assumptions made, and the results.
I can even read a press release issued by the AAMC about the article. But I can't read the article and reach my own conclusions about the methodology employed, the assumptions made, and the results.
Tomorrow, I may be able to read newspaper reports about the article. But I can't read the article and reach my own conclusions about the methodology employed, the assumptions made, and the results.
Oh wait, I can, if I pay $15 (plus tax) for the privilege of having 24 hours of access to the article, and only from the computer I am currently using.
Please understand that I do not begrudge journals that need to charge subscriptions to stay in business. But I find it upsetting when a respected journal issues an occasional article about an important public policy issue and does not allow wide and unhampered circulation. Surely, allowing open access on such a matter can only enhance the reputation of the journal. Restricting it is totally unnecessary and, beyond the mercenary aspects, feels elitist and condescending, a reputation the medical profession does not need to reinforce.
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27 comments:
Going further with your point, the Committee for Economic Development just released a report entitled Harnessing Openness to Transform American Health Care. In the report they recommend that the data, if not the actual report, be open.
Open reports are along the lines of those found at the Public Library of Science.
Disclaimer: I was cited in the CED Report (Yea Me!)
Many of the social network bookmarking services won't accept links with registration or paywall requirements. This means that policy/opinion articles from healthcare newsletters cannot be shared via bookmarking services. Perhaps JAMA would consider adopting a "blog" format for policy/opinion articles instead of applying the paywall approach to all articles.
Interesting timing, given today's NY Times article on how Harvard faculty will be voting to publish scholarly articles for free on an internal site.
"At Harvard, a Proposal to Publish Free on Web"
http://www.nytimes.com/2008/02/12/books/12publ.html?scp=1&sq=harvard+journal&st=nyt
YAY!!!! I'm your complainer. Thanks for putting it in such an eloquent way. I would extend this criticism to the New England Journal of Medicine as they often have articles/editorials of similar import. They're not the only ones, of course.
I hope someone listens to you, Paul; this is important for the future of medicine and health care delivery.
ps I don't understand your new naming system for commentators yet, but I am nonlocal M.D.
This issue is playing out in every profession and industry in America. People fear the web will put them out of business...and it may...the only way to stay ahead of the curve is to be a significant player in the new technology. Those who are too frigtened to jump in will be left behind by creative risk takers who are already designing protocols for surviving in the future.
Onehealthpro
Just ask a librarian....
While I agree with your post as it relates to the general public, as someone who works in a hospital library I'm very surprised that you wouldn't have access to JAMA through your own institution's library.
If you were using "I" using yourself as a representitive of the public, please ignore my above comment. :)
I completely agree with your point about open access, especially on public policy matters: but I hope people don't forget that they can usually access these articles through their institutional libraries for free (as we can at BIDMC - thank you, Knowledge Services/Medical Library!)- Also through public library networks based in your towns. Don't be stopped from getting the information!
A hospital admin does not get JAMA?
No, I don't get JAMA. I get notices of interesting articles.
And, yes, I could get access through our library, I guess, but that doesn't help me at 10pm when I am working at home and have time to read the article.
The idea is to make it available to all, even if they don't have easy access to a library.
There are two issues to consider here, Paul.
With regards to your personal access to JAMA, check with your hospital librarian to see if you have off-campus access to JAMA. If you don't have it through BIDMC, your state library system may offer it.
Your "I guess" comment about getting access to JAMA through your hospital library tells me that you don't know, which gives me the impression that you are probably not taking advantage of all that your librarian (and the library at BIDMC) can do for you. As the CEO of what sounds like a very progressive institution, you are, in my opinion, crippling yourself personally and organizationally if you don't have a good working relationship with your librarian.
With regards to the issue of universal access to articles of this nature, there I do agree with you. Many top medical journals (New England Journal of Medicine and BMJ, for example), make important research available at no charge because it's the right thing to do. Hopefully JAMA will reconsider its position here.
Folks, thanks for all your helpful advice, but this isn't about me! It is about the hundreds and maybe thousands of normal people who don't work in a hospital or medical school and might be interested in this topic and might want to be involved in the debate.
The "hundreds and thousands of normal people" can always get the article through Interlibrary Loan at their local public library or from a college/university library that they are an alumnus of. The Internet does not always give access to all information--libraries are still necessary institutions. My local town library can get me anything I want; all I have to do is request it from them.
Oh, please! This is 2008. All I am saying is that an article of general public interest published by a respected journal should be available in real time on the Web.
Paul,
Rest assured, Knowledge Services at BIDMC does provide remote access to all of our journal subscriptions. The larger question you pose has to do with Open Access which is supported by the entire medical and academic library communities and the NIH. Much of the Open Access issue regards public access to publicly funded (NIH) research. However your argument in favor of public access to studies that have been publicized in the main stream media is excellent and can only serve to benefit both the publishers and the public good. Thank you for being an advocate.
Paul Levy said: "Folks, thanks for all your helpful advice, but this isn't about me! It is about the hundreds and maybe thousands of normal people who don't work in a hospital or medical school and might be interested in this topic and might want to be involved in the debate."
Open Access is definitely the way to go if you want to promote democratic access to knowledge. There are no 2 ways around it. It is unthinkable that the e-patients, those who are most in need to access to full text articles are stopped from doing so because of the absurd current cost structure. But publishers are already on the losing side of this battle for survival. It is EXTREMELY rare to be denied access to the full text PDF, if you ask the corresponding author. So publishers will try to stiffle that kind of exchange by DRM'ing articles but we will always find ways to maximize access to life saving information.
This conversation is currently taking place across the board. Just look at danah boyd's call to boycott locked-down academic journals:
http://www.zephoria.org/thoughts/archives/2008/02/06/openaccess_is_t.html
As an academician who has been 'between' institutions and in the area of public health research, I find these mechanisms of information dissemination frustrating. Acquiring vital information through interlibrary loan is also an assumption of time luxury most individuals simply do not have today. And so, the public remains dependent on the priesthood.
It has been maddening to me that whereas JAMA used to at least make abstracts accessible to average folk, it does not now. Paul, if you got an abstract at home (not through BIDMC system) how did you do that?
I'm happy to see that our BIDMC journal access IS now available from home (that's new).
NEJM makes quite a few articles accessible to the public (I get their weekly email table of contents) including those of wide public interest
In general I think this is endemic to the general copyright/reproduction/distribution crisis faced in all countries with widespread Internet access for the population. In the past, material costs and shipping costs were a significant hurdle to widespread reproduction of materials. This made it easy to integrate the cost of production and the cost of distribution.
Now we're in an interesting situation in which the cost of production of something is not zero. The initial cost of distribution is not zero, but the marginal cost of redistribution (i.e. emailing it to a friend) approaches zero.
In the case of a medical journal article, the cost of production is covered by some other funding source. The journals have the cost of distribution to recover. With paper subscriptions, the printing and shipping fees are obviously incurred. But there are costs for web-based distribution as well. A server (or servers) that handles the connection volume, power for the server, cooling for the server, replacement parts for the server (lifetime 5 years-ish, give or take), a systems administrator to manage the hardware and software on the server, a web server to manage the incoming connections, possibly a webmaster to manage the webserver (although in some cases the sysadmin or content management folks can fill that role), a content management system (although there are some good free/open source ones), a database for the content management system (again, some good free/open source ones), and someone to manage the distribution of articles, their inclusion in the content management system and indexes and make sure there are no broken links etc. It's cheap for me to email a downloaded article to all of my friends, but expensive to keep it widely available and easy to find for the world at large. This is a huge problem for newspapers these days. One model that seems to work for news media in general is that you either subscribe or you view an ad in order to view content. This model is problematic for journals if they don't want to be beholden to advertisers.
I'm not sure what the solution to this is. On the one hand, I totally agree that people need access to current, highly relevant information. The goal of education in general is that with widespread access to information, the world gets better. On the other, the articles that everyone wants to read are the articles that potentially generate the most revenue. So then the question is whether the publication costs can be met when the highest value products are free.
While it's frustrating to find out about a study and not have access to it, how is that different from any other type of advertising? That mouth-watering steak on the TV commercial looks really good, but if I cannot or don't want to pay for it, should the restaurant be obligated to give it to me for free? I wonder if it's the perception that providing online content is cheap, and/or the large amount of information available on the Internet that is free, creates some of the perception that access charges for some information are unreasonable. Personally, I would gladly pay an information access tax that would allow public access to all scientific populations, but I don't have any idea how popular an idea that would be.
In some fields, current or not-yet-published articles are available in the Cornell University Library's arXiv.org paper repository (x for the greek letter chi, to make an arCHIve). Submitting a paper for journal publication after it has been submitted to arXiv is technically forbidden by most journals, as authors must assign their copyright to the journal (which is a whole separate rant). This hasn't (to my knowledge) come up as a problem yet, but it may in the future. It's partly funded by Cornell (a great public service!) and also funded by the National Science Foundation (a great use of tax dollars, in my opinion).
This model puts journals out of business; or rather it more strictly defines their roles: separating the wheat from the chaff, endorsing good science, and providing quick access to the best of current research in a field. And also potentially providing the information in a format that people find convenient (a printed journal). Of course, this also exposes the fact that much of the work in theory provided by the journals is, at least in my non-medicine field, a volunteer effort provided by others in the field as to assessing the validity, novelty, and impact of submitted publications. Thus paying the journal for that effort does not necessary make sense given that the service is free to them. (although the task of wrangling reviewers is not a trivial one)
Finally, what really sticks in my craw about these inaccessible medical journal articles is that in a lot of cases, the studies and the writing of the articles was funded by NIH or other public funding sources. It is to me unethical to have the population at large (the taxpayers) funding this research and then denying them access to the results.
I just did a Google search and go the link above.
er, I meant 'widespread access to all publications' not all populations.
This debate has been raging for a long time and I'm glad you are giving it some much-needed attention. Most of these studies are funded at least in part through public funds, typically through grant money given to institutions, but also through federal funding of student loans and other less obvious methods. The public, therefore, should have free access to the results of the research it's funding.
Here's a link to a collection of Open Access Journals: http://www.doaj.org/
Paul, I would love to see you start directing your staff and doctors to consider publishing their research in open journals whenever one is available on the appropriate topic. Would you consider doing some education about this to the appropriate researchers at your hospital? I've got a good deal of experience and live in Boston--I'll come in and help you set up a training, gratis, if you'd like.
Jason Turgeon
Publisher, Textbook Revolution
www.textbookrevolution.org
Jason, I don't direct the doctors and the research staff here at all. They are independent members of an academic faculty, and it is up to them as to how and where they publish their articles. I am not the appropriate person to advise them on this matter. Your audience is the Chiefs of Service of the various departments, who have responsibility for mentoring their faculty in academic matters.
Fair enough. My offer stands: if you are willing to help me coordinate with the appropriate people, I'll come in and talk for half an hour (or longer, if requested) on why open access journals are important and how the researchers at your hospital can have a positive impact on society and health simply by switching the journals they submit to. We'll try to make it fun and lighthearted. We could do it as a "lunch and learn" or something like that for a big audience, or target it just to the chiefs of service.
Jason
jason@textbookrevolution.org
I suggest you start with Margo Coletti, our wonderful BIDMC librarian, who says to me in an email:
"We need to do more at the HMS teaching hospitals to ensure that our researchers and clinicians publish in non-restrictive journals, that they retain copyright to their own work and that we are able to archive our own published works. No author should have to pay for access to his/her own published work (often the case) and the public should never, ever have to pay for publicly funded research."
So, there is your first ally. Please contact her directly.
I am a diabetic with breast cancer,disabled,fixed income.Schooled and worked as a medical data analyst.
After reading a dubious headline, or hearing a news tease, I head for www.medpage.com , until I can get to one of the Boston hospitals that offer full access to patients.
This after being frustrated time and time again by limited access.
Lucky for me, I live in Boston, have searched out the facilities that have these resources...even the journals, if I act like I belong.
Comparing mass media bits about research, unsourced,vs the original...no comparison.
Paul,
In this political season, all I can say is PAUL FOR PRESIDENT. Thank you for speaking on behalf of ordinary people who want access to health news and information. I have always worried about the digital divide -- which anecdotally I feel is growing -- and this seems a more sophisticated version of that.
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