Adventures in research

Sometimes my work life and my volunteer life collide in curious ways. Recently, they collided in a manner that really just left me scratching my head.

I spent nearly a year working for a corporate library, where I obtained (usually scientific) articles for corporate clients from academic interlibrary loan services and scientific journal publishers. When I was approached by the Moebius Syndrome Foundation to help procure a clean copy of an old medical journal article with a very positive outlook on Moebius syndrome (the first of its kind), I naively thought to myself… “how hard can that be?” Well, it turned out to be harder than I had imagined!

I logged on to the Copyright Clearance Center website, inputted all the necessary information… and then I got stymied at the “Permission Type”… there was no category for non-profit use, much less personal patient use. We are not academia, and definitely not business.  Printing out copies for the use of a few patients seemed to be uncategorizable.  So I e-mailed customer service, as I was instructed to do. And waited.

Two months later, I received a message saying they were closing my case because the “request does not fit in with our regular categories”… well, I e-mailed them as instructed to precisely because of this issue! And obviously e-mailing them was not the solution.  Because I work in information science and have a lot of experience in academia, I knew Interlibrary Loan would work as my last resort for getting a copy of the article.  So I used that, through a colleague on the Moebius Syndrome Foundation board who has access through her university, and obtained a cleaner copy. 

Although I feel a bit bad about it, I will have a few copies of this copy (how confusing is this?!) made for the Conference this summer to hand out – even though technically I should get permission (and pay) to do so…. but if the journal publishers and copyright center won’t process my request at all, what am I actually supposed to do?  I really did want that pristine clean copy, too.

The internet has made academic journals easier to access in a way, you can get Google Scholar alerts sent to your inbox daily. But those only send you to abstracts.  Getting from that abstract to a useful and complete article can many times be impossible, due to access issues and personal pay walls.  A Pew Internet study recently found that 1 in 4 internet users online hit pay walls in accessing health information, and even more important in my case – 30% of those living with chronic conditions faced a pay wall when looking online

I don’t know if I could even call what I experienced a pay wall – is not even being able to pay for something because you can’t get anyone to get back to you in a timely manner a pay wall?  I was prepared to have the Foundation pay something for usage… until I saw it going into the $100s of dollars for a few printouts.  So I guess I did kind of hit a pay wall.  Keep in mind, this article was written in 1986, for god’s sake! It’s not like it’s particularly important or relevant from an academic standpoint.

Except it is relevant for patients.  In 1986, my parents had a 3 year-old (me!) with a super-rare condition, they were told there was a very good chance I would never meet anyone else with the same disorder and who knows what else.  Then my (amazing!) pediatrician and geneticist shared this article with them – about a successful professional, a nurse, with Moebius syndrome – living a productive and full life.  It was the first time, undoubtedly, that anything “positive” was published in the medical literature about Moebius.  So it’s important to have and share with coming generations.

As someone who has spent time both in academia and publishing, and now working in information services, and as a patient seeking and sharing medical information (or, an e-patient, as we sometimes are referred to as), I am honestly torn on the concept of open-access journals: I want the information to be readily available for patients, scholars and those in the medical profession, but I understand the needs of the publishing industry to be reimbursed for the time and effort of academic publishing.  So what in the world is a good solution to this? I really don’t know. I’m thinking there should be an avenue for people who do not clearly fit the parameters of either business or academia to request articles for use within patient communities.  I think that would help many people access and share valuable information.


  1. When you and I chatted back and forth about this on Twitter, I couldn’t believe what I was reading: a publisher was placing barriers in the path of a rare disease community which wanted to share a 30-year-old article about their condition, co-written by someone with that condition???

    I have to believe that this is a kink in some automated system, not a real human’s decision. I have to believe that if the publisher understood who was asking for a copy of the article, and for what purpose, that they would proudly expedite delivery of a beautiful, clean version. I have to believe that or I have to give up on my belief that most people are reasonable and would be helpful if they had a chance. And I’m not willing to do that.

    I also have to believe that the authors’ intent was to spread their findings as far as they could possibly go, especially to the far reaches of the Moebius Syndrome community. Few audiences would be as appreciative of their work, as we see whenever (for example) Kathleen Bogart’s research about Moebius is presented.


    1. Natalie says:

      Ironically enough, Kathleen put in the ILL request for me for this once I gave up! We both were in the Bay Area going to grad school for a few years and connected then.

      I really agree with you, I really think it’s a failure of customer service and automated systems rather than any intentionality on their part to block access, but imagine if someone needed something that was time-sensitive?!


      1. Yes, I should have said “for those not familiar with Dr. Bogart’s work” 🙂

        Save one of those copies for me — see you in July!


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