Thursday, September 01, 2011

A paywall around medical information

Medicine-by-Google (MBG), the practice of using the web for research about medical conditions, has been around for a long time. We develop a pain that we don't recognize or discover rash in an unexpected place and we head off to Google for some tips.
According to the Pew Research Center, two-thirds of us use the Internet to locate information about symptoms, conditions, product safety, and insurance. The quality of information available for free (or for free with registration) is generally quite good. With a bit of practice and a few guidelines, such as A User's Guide to Finding and Evaluating Health Information on the Web, you can do well. PubMed is one of the richest resources for publicly-available medical information.
What if, however, you need to dig deeper. You need to explore subtleties of side-effects to your medication. You have a collection of symptoms, sometimes called a syndrome, that have coalesced into a diagnosis. You've started treatment and you don't like what's happening.
The thousands of medical research journals generally don't publish their findings online for the public. You can typically find abstracts of articles, giving you a good summary of the research findings. Subscriptions to these journals range from the relatively modest $139/year for the weekly New England Journal of Medicine (NEJM). to over $400/year for the monthly Journal of Child Neurology. Most subscriptions offer both print and online access. Some, if you're lucky, will offer a lower price for online-only.
A few years ago, while I was being treated for a resistant condition, I bought a subscription to the NEJM, primarily for access to the back catalog of research. I found good stuff about the various medications I was trying. Once the condition stabilized, I let the subscription lapse.
To research more broadly, you need to go to a library, preferably a medical or academic library, that has subscription plans to the SAGE, JSTOR, MEDLINE, and others. In most cases, you can only access these services at the library's workstations. Access may be further restricted to medical or  library staff.
In an effort to preserve the value of their print editions, a few journals will embargo publication of their online material for up to a year. A research study that was published last November, for example, might only be available in hard copy until November of this year. That is, if the library has a hard copy subscription or any subscription at all.
Further, with budgets trimmed in all areas, sometimes these research libraries will drop subscriptions for less popular journals. (If the content is online, it's easy to determine how frequently the journals are used.) Important research findings are thus out of reach.
You don't have to be cynical to realize that there is money involved. The researchers are paid by the journals that publish the findings. The journals typically have a team of peer editors that reviews the report for quality, completeness, and accuracy. (We'll set aside the controversy over subsidized research for now.) The expense of the process is covered by subscriptions and advertising revenue, as is the case with any publication.
Considerable savings can result when you go to an online-only publication model. The savings aren't enough, though, to do away with subscription charges, no more than online-only access to books and newspapers.
There isn't a fast, cheap, and good solution or we would have found it already. This remains one of the hidden healthcare costs. Our solution for now is to remain ignorant of the potential valuable research that lies unreachable in the granite of the paywalls.
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Update: After the initial post, I found this from The Onion - Failing U.S. Economy No Reason At All To Stop Investing In Print Media, All Experts Agree

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