Editorial Note: Ken Spriggs is one of our regular contributors. This is cross-posted from his blog where he takes on all issues Crohns. The original post comes complete with all references mentioned here. [It’s no longer available at http://diyehr.com/e-patient-boundaries-and-the-publishing-profiteers/]
In recent months, the BMJ have trumpeted the patient power revolution and featured a contribution from e-Patient Dave. In this piece, Ken brings out how difficult it can be in practical terms to get involved in your own care.
This makes it all the more remarkable that women like Anne Marie and Samantha Dearnaley with no healthcare background or university training have been able to do so much to nail down what has gone wrong for them and many others. On a group basis, the sufferers from PSSD have been inspiring. Motivation is something people who are affected by drug induced problems have in spades – RxISK is about helping to make it easier for them to do the job.
I’m sure someday we won’t need the word e-Patient. The tenants behind the “e” will be expected and eventually become the default patient/physician relationship. A problem solving partnership.
That’s a change in culture. It will happen but we don’t live in that world yet. Ours is an antiquated paternalist top down legacy with its fair share of condescension, contempt, and greed. The great democratization of the conversation can only go so far without legal challenges. The most institutionalized of which is our drug laws.
But that’s not what this post is about. This post is about access to published health care related research. It’s a boundary where the e-Patient could get stopped. There are workarounds and subversive tactics to deploy. It’s baby steps or maybe even learning to crawl.
My illness has vanished
I recently read the Wikipedia article about Crohn’s Disease and was surprised to find out:
Crohn’s disease has wrongly been described as an autoimmune disease in the past; recent investigators have described it as an immune deficiency state.
What? Come again. I was diagnosed with Crohn’s in 2001. I’ve heard it was an autoimmune disease about a zillion times. I’ve told people I have an autoimmune disease. And now I guess I don’t. Wikipedia just ended my autoimmune disease! So forget the misinformation I’ve spread let’s get out the party hats: I DON’T HAVE AN AUTOIMMUNE DISEASE ANYMORE! Wooohooo! But of course cured by reclassification doesn’t fix jackshit. Nevertheless I’m keenly interested.
So how did this reclassification happen? The Wikipedia sentence isn’t joking around, it comes complete with six references. Six. That’s convincing (or suspicious). But what if in my new-found-immune-deficiency-state-of-bliss I want to turn into Super e-Patient and read all these references? How far can I get? Let’s see.
Reference Seven is Crohn’s disease: an immune deficiency state. I’m directed to SpringerLink through two different paths: first through the digital object identifier (doi) and again via the PubMed Identifier (PMID) with a small detour through the National Center for Biotechnology Information (NCIB) PubMed.gov website. Through both paths I end up having to pay Springer $39.95. Doing an advanced Google search using the full title with filetype:pdf appended to the end gets me to a preview page of the article. But unless you’re just interested in the first two pages you’re back at SpringerLink’s pay me page.
What to do?
Luckily I live within two miles of Colorado State University where I’m happily a community borrower of the Morgan Library. By logging in from home I can see CSU doesn’t have a subscription to Clinical Reviews in Allergy & Immunology. But after a trip to the library I was able to get a copy using the library’s computers. It’s a fluke of sorts that CSU’s system said it didn’t have the journal. I’ll explain.
From within the library I visited the Wikipedia entry for Crohn’s. I clicked on the PMID in reference 7 and was sent to a familiar looking NCBI PubMed.gov page. But now by clicking on the SpringerLink Full-Text Article in the upper right corner I was led to the PDF in place of the sales page. Being onsite in the library is key.
So how did it happen that I could access this journal which CSU’s system said it didn’t carry? I spoke with a librarian at the Help Desk and this is her guess: A package deal from Springer for 100′s of journals was purchased which included Clinical Reviews in Allergy & Immunology but the library overlooked adding it to the list of journals it carries. The librarian started her email to the appropriate library authority while I was still standing there.
Reference eight is Mycobacteria in Crohn’s disease: How innate immune deficiency may result in chronic inflammation. CSU doesn’t carry the journal Expert Review of Clinical Immunology. But this time it really doesn’t. So I wrote the librarian in charge of the biological sciences and she swiftly replied:
I’m sorry we don’t have the article you need. I think that your best bet would be to use Interlibrary Loan from your local public library. If you are in town and have a public library card, the directions for ILL at the Poudre River Public Library District can be found at: http://www.poudrelibraries.org/information/ill-faq.html.
Also, if you don’t mind the drive, the Health Sciences Library at CU’s medical campus may have a more comprehensive medical collection than we do. https://hslibrary.ucdenver.edu/
Hope this helps,
Mucho gracias Michelle! I made the request through Poudre River Libraries InterLibrary Loan on Saturday July 20, 2013 at about noon. After waiting a few days I gave up and emailed one of the paper’s authors. About 3 hours later my inbox scored. Thank you, professor. After opening it I noticed the water mark “Author Proof”. It runs across every page. I’ve politely requested journal articles from professors before and none has ever pretended like they didn’t get my email. I use it as a tactic of last resort. InterLibrary Loan sent a PDF to my email 3 days later.
If hunting down the author didn’t work access through Expert Reviews is $86 for 24 hours. It wasn’t clear if I get access to the entire journal for 24 hours or access to one article. I emailed my question to find out:
Thank you for your recent email correspondence. I can confirm that this is access to the article PDF only, this will allow you 24 hours access in which you can download the PDF to keep for your personal use on your computer.
You can also subscribe to the whole journal, see more information below:
If you have any queries or if I can be of any further assistance, please do not hesitate to contact me.
This email came from a Customer Operations Executive at a company I didn’t realize I was emailing. It’s called Informa Healthcare and from their website it looks like they’re a middleman between subscribers and a smorgasbord of healthcare related publications. At the least we can deduce they collect subscription fees, have a sales and marketing presence, and provide hosting to the individual publications like Expert Review of Clinical Immunology.
Yes, a modern day publishing company as it is. I’ll bet a hefty chuck of the $86 goes to Informa Healthcare and a pittance is passed to Expert Reviews. But it turns out that Informa Healthcare is under the umbrella of Informa.
Informa came into existence in 1998 through a merger between Lloyd’s List and IBC so it really dates back to around the 1690′s, yes, that’s not a dyslexia-style typo, that’s the late 17th Century. Informa publishes in about ten major categories, healthcare is one. Since it’s growth has been through acquisition it controls a bunch of familiar publishing industry brand names. Names like Taylor & Francis, for example.
The opposite to open access
Informa considers themselves “the best knowledge provider in all sectors and markets”. To say Informa is a media giant is an understatement. The journal article I’m after is only 8 pages long. At $86 that’s $10.75 per page. Is there any other reading material which fetches a similar premium? It appears more like a strangle hold on healthcare related academic publishing. And bare in mind the academics who wrote that article will get exactly zero dollars from the $86 and neither will their respective academic institutions. Oh, and neither will the peers who reviewed it.
In a sinister circle of control the academic institutions will actually turn around and pay Informa the subscription fee for Expert Review of Clinical Immunology. Since universities are funded mainly by taxpayer dollars, and so too are most academic research grants, this is one of those situations where taxpayers are getting screwed in holes they didn’t even know they had.
It’s the opposite of the Aaron-Swartz-free-JSTOR ethic. It’s the Milo Menderbender way of the world: Vice grip death lock strangle hold. You too can buy a piece of this racket: Informa PLC trades on the London Stock Exchange under the ticker symbol INF (using google.com/finance try LON:INF). If you’d like to learn more about Informa, which you might already own through a pension or mutual fund, I suggest the corporate video on their homepage. It’s only about 4 minutes and you’ll get to listen to The Verve’s Bittersweet Symphony play as background music while a smooth professional narrator explains how Informa has gotten you to pay for it to shape your worldview while still giving you the illusion of freedom of choice. Oh and btw, thank you, Irony:
…Cause it’s a bitter sweet symphony that’s life…
Try to make ends meet, you’re a slave to the money then you die…
Reference Nine is Crohn’s disease: Innate immunodeficiency. This paper is in World Journal of Gastroenterology and you can get it for free by following the PMID link to the NCBI PubMed.gov site and clicking on the Baishideng Publishing button in the upper right. You can either read the html version or get a PDF.
Baishideng Publishing uses a Creative Commons Attribution – Noncommercial License. (This blog also uses a Creative Commons license.) The journal is peer reviewed and the authors pay a $600 publication fee if their article is accepted.
Reference Ten is What’s in a name: The (mis)labelling of Crohn’s as an autoimmune disease. This article is published by The Lancet, a historically English medical journal which is owned by Elsevier which is owned by a parent company called Elsevier Reed, which is Dutch. It’s one page which makes it the most expensive article per page so far. The cost from home would be $31.50 but from the CSU library I was able to obtain the PDF.
Eleven and twelve
Reference Eleven is Defective IL-1A expressions in patients with Crohn’s disease is related to attenuated MAP3K4 signaling. It’s published by Human Immunology which is also owned by Elsevier. At 7 pages the cost of $31.50 breaks down to $4.50 per page. The CSU library’s deal with Elsevier also covers this journal.
Reference Twelve is Revisiting Crohn’s disease as a primary immunodeficiency of macrophages. It’s published by the Journal of Experimental Medicine (JEM) which is controlled by The Rockefeller University Press. The copyright is by the authors. It’s distributed under the terms of an Attribution–Noncommercial–Share Alike–No Mirror Sites license for the first six months after the publication date (www.jem.org/misc/terms.shtml).
After six months it’s available under a Creative Commons License (Attribution–Noncommercial–Share Alike 3.0 Unported license as described at https://creativecommons.org/licenses/bync-sa/3.0/).
I was able to access it for free from my home computer by clicking the link provided in the reference section. There’s a price of $30 mentioned but I believe that’s for the first 6 months after publication. Out of curiosity I checked if CSU’s library carries JEM. They do but I have no idea if they pay a subscription fee to The Rockefeller University Press. In any event it’s certainly a slightly friendlier way to publish than the Menderbender screw-and-screw-some-more model.
Adding it up
Let’s do some math. Had I paid for all these articles the cost would come to $188.95. There’s 164 references in the current Wikipedia entry for Crohn’s disease. If every 6 totaled $188.95 this would bring the cost of collecting the entire bunch to $5,138.67. I doubt it’s really that high because not all references are to academic journal articles. But nevertheless why is any of this material behind a pay wall? All I wanted to do was read the references about the recent reclassification of my own disease.
As for Wikipedia’s argument for the reclassification of Crohn’s, I can’t say I’m convinced. I haven’t gotten a chance to read any of the articles yet.
While writing this I began to wonder how my private practice G.I. doctor stays current. At the very least the pay wall makes the latest material harder to get. How many journal subscriptions do doctor’s offices carry and at what price? What’s the bottom line cost to healthcare of this pay wall to published tax payer funded healthcare research? What’s the bottom line human cost?
There might be changes to the law coming. There are things you can do. A good summary of the current state of open access can be found in Aaron Swartz’s Wikipedia entry towards the bottom.