Tuesday, July 9, 2013

Snowboarder vs. Medical Science Paywalls

Medicine Art

Before my accident, medicine appeared to be part science, part chance.  Science led to a medical procedure with some chance of success.  This chance depended on a number of risks and was measured as a percentage  a number.  

Since the accident, I've learned medicine is also part art.  You'll probably hear this word when things go wrong.  We heard it when we discovered an infection and found out later that year the ankle enjoyed staying broken.

When most doctors tell you medicine is an art, they're actually talking about that chance of success  that number.  The statistical chance to medicine.  There are a number of factors, forces outside of their control, that decide where the chips fall in your recovery.  It's their way of saying medicine is not an exact science.

Unfortunately, the phrase, "art of medicine," is misused like this frequently.  There are no external factors in the art of medicine.  When a surgeon leverages his unique intuition and experience to deviate, react, and invent in service of a patient's best interest  that's art.  In the operating room, the surgeon is an artist.  He's picking Hansa Yellow Medium over Yellow Oxide (please find a new surgeon if he spends his time painting you yellow).

Medicine is an art.  Each surgeon has unique intuition and experience.  No two artists are the same.  The art of medicine is why you get a second opinion.  In fact, as a patient, it's your distinct privilege.  But as with all privileges, this one comes with some baggage: responsibility.  

Your biggest responsibility as a patient is to be informed.


Unfortunately, it is scary-difficult to be an informed patient.  I've been a patient and a writer for this blog for over three years.  Both duties require that I spend much of my time on Google and Google Scholar.  But those resources only go so far.  Most of modern medical science sits behind a paywall.  

Alex Mayyasi, a writer for the Priceonomics.com blogwrote this great piece on science paywalls in May.  He highlights the enormous costs of obtaining access to scientific knowledge and also calls out the egregious profit margins publishers like Elsevier make  in the neighborhood of 36%  on scientific research they didn't even fund.  It's nuts.

For a few years, while my wife was in nurse practitioner school, I had an insider behind the paywall.  I had access.  Her university paid hefty annual fees to these publishers so that students like her could have access to the information.  I used Google to find interesting abstracts and asked her to download the full-text versions.  I'd use that information to do the research and keep you informed on the latest developments in ankle arthritis medical science.  Now that she's out of school, I'm an outsider again.  Like most of the American public.  There is a significant paywall between us and the medical science we need to be informed patients.  And it's not going away anytime soon.

Let me give you an awesome example.

Dr. Attinger and his residents published an article this year on his unique below-knee amputation technique.  The title of the article, a mouthful, is, "Below-Knee Amputation with Vascularized Fibular Graft and Headless Compression Screw."  It was published in the Plastic and Reconstructive Surgery Journal, owned by Lippincott Williams & Wilkins (a publisher like Elsevier).

A full-text version of this article is not freely available on the Internet.  It sits behind a paywall.  You'll only find the abstracts and tiny thumbnails of the pictures in your Google searching.  If I want to get a legitimate digital copy of the paper, I could pay $873 a year for access to the journal.  If I'm not willing to shell out a grand a year (which if it isn't obvious, I'm not), I could download a PDF of the paper from the journal's website for only $62.54.  There's no way I'm paying that much money for a digital copy of a paper that is only five pages long.  

I need a chalkboard to diagram how this works.

However, there might be a way around the paywall.  Fasten your seatbelts.  It's going to be a convoluted ride.

First, I went to the National Center for Biotechnology Information (NCIB).  Again, I only saw the abstract, not a full-text version of the article.  But with this website, I have the option of ordering the article through a service called LoansomeDoc, sponsored by the National Library of Medicine.  This service allows users to obtain full-text versions of medical articles from participating libraries across the United States.

The signup process for LoansomeDoc is arduous.  To use this service, you must be sponsored by a university library that's willing to serve the general public if you do not already belong to it.  The only library listed for Washington, D.C. was the Howard University Health Sciences Library.  And I couldn't just automatically select this library and continue with my LoansomeDoc registration.  No.  I first had to contact an administrator at the Howard library to obtain an authorization code.  I left a message for the admin asking for my LoansomeDoc authorization code.  Twenty bucks says the guy has no idea what I'm talking about.  If and when I get the authorization code from Howard University, I can complete my LoansomeDoc registration and request the full-text article.

The article orders are not free.  Each library charges delivery and processing fees for LoansomeDoc article orders.  And that's only if they have access to the Plastic and Reconstructive Surgery Journal.  I have no idea if these fees will be close to the $62.54 the journal was going to charge me for the full-text version anyway.

It's not just a paywall that stands in our way.  There's another wall between us and the information caused by the convoluted process to obtain the information we need as patients.  I'm totally expecting this process to fail.  I wasn't even going to try to use this workaround until I wrote this post.  

It's an unfortunate situation.  And while I wish concepts like open science could work, the incentives just aren't there.  If you make the journals free, the costs get shifted down to the researchers.  When's the last time you saw an affluent doctoral student?

Chris's Ankle Explosion

I started writing this blog post after talking to a couple we met through the blog.  Chris fell 27 feet in a rock climbing accident and destroyed her ankle.  I mean destroyed it.  She's been writing about her recovery on her blog since the accident.  Two years later, her tibia at the articular surface of the joint still has not healed.  Now she's at a crossroad in her recovery.  Does she get a replacement or start the difficult process of considering amputation?

We've been talking back and forth over the last couple of days about our situations.  It's a unique struggle.  The most important thing we can do is stay informed.  That lets us weigh the risks, document the tradeoffs, and ultimately make the right decision that's in line with our goals.

But as Alex shows in his article, scientific paywalls stand in our way as patients.  When facing the decision of a lifetime, such as amputation, without this information, we're less empowered and lay at the mercy of our doctor's opinion  of his unique art and experience.  And I'm not saying that's necessarily a bad thing, you just have to hope his artistic style aligns with your goals.

In spite of these roadblocks, do your best to be informed on the science of your disease (not the Dr. Oz shows).  Recognize that any one specific scientific article does not represent a proven and viable medical option.  Exercise your patient privilege to get second opinions.  But don't, for one second, think you know more than your doctor.


  1. Alex sent me this great website if you want to do some research on your own: http://www.deepdyve.com/. It allows you to rent articles from journals for 5 minutes. It's a start (I can't read a 20 paged science journal in 5 minutes).

  2. Maybe this is a dumb question, could Dr. Attinger give you a copy of the article? Keep up the recovery and the great blog!

  3. He did, actually. He gave me a hard copy of the paper the day we consulted with him (this was how I knew it was 5 pages long). The real point is there are a number of other papers I'm interested in reading because I want to know more about why some surgeons prefer salvage at the expense of function and others, like Dr. Attinger, are willing to recognize when salvage actually isn't in the patient's best interest.

  4. Can't you ask AmputeeOT? She should be willing to help you.

    1. I don't think Christina has access through the paywall, but maybe she does as an occupational therapist. I'll ask her.

  5. Wow....you and Brooke should start a consulting business! Hey, maybe you could call it a non-profit initiative and actually get funding! (okay...a bit idealistic I'll admit).

    Ever since working in mental health and knowing about how kickbacks happen in healthcare I have been skeptical. We want to be trusting of our medical professionals, but the reality of profit-initiative in healthcare has been too well documented recently to NOT question it.

    BTW, even now my computer is peppering me with Inbone replacement ads. WTF? I am having flashbacks to Orwell's "1984"

    You're right....there is an art to understanding patient needs, and it involves a combination of factors, (ie, not JUST an ankle joint, or whatever the specialization)

    Dorothy, we're not in Kansas anymore.

  6. I'm in med school--I'll send you hard copies! It is ridiculous, information should certainly not cost $62. The potential danger is Angelina-impersonators who all want double mastectomies now b/c she had one and not because they are actually warranted. Obviously, you take the time to know your stuff inside and out. Unfortunately most patients only bother with what's flashy today. Then again, they also wouldn't be searching for scholarly articles... :)