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Posted on 26. June 2014

A Call for Open Access to Medical Journals

By Yoni Maisel

Rare disease patients and advocates are well-known for being investigators; the theoretical and applicable knowledge about our disease states that we proactively accumulate often surpasses that of our primary care physicians and, in some cases, can equal that of our specialists.

During his April 4, 2014, podcast on Mendelspod, “Rare Disease Horizons: The Hope of New Research and Technology, Part I: Genomics,” Dr. Eric Topol, the highly esteemed advocate of participatory medicine, said of rare disease patients: “They are empowered, try to stay up-to-date with the latest information, are willing to take action; are proactive.” Pew Research held a similar view when it released its report titled “What People Living With Rare Disease Can Teach Us.” In this wide-ranging report, rare disease patients were crowned by Pew as the undisputed “power-users” of Internet-based medical information.

Stories abound in popular media of rare disease patients becoming full-fledged detectives, immersing themselves in medical literature, poring through research articles, compiling and evaluating data, attending conferences and symposia, all in an effort to obtain the latest information on research, trials, treatments and more. It is information that is not easily obtained from our physicians with whom we might spend a total of two hours within a given year. It is also necessary, oftentimes critical, information which we as patients peruse, sort through, study and, in many cases, disseminate to others; often, we keep our own physicians up to date with the knowledge we imbibe.

Yet, with all of our efforts, there is one thing that often stands in our way: closed-access medical journals. For the rare disease “Sherlock Holmes” or “Miss Marple,” nothing is more frustrating than coming across an article of great importance and relevance and having access only to a limited paragraph-long abstract.

Journal subscriptions range from quite to very expensive. Many journals are stand-alone publications, while others are included in multi-journal databases such as Springer and Elsevier. Most journals have open access if the researcher belongs to a subscribing academic institution. The fact is, however, that rare disease patients most often bear a large financial burden inherent with their conditions, and few belong to academic institutions.

I think rare disease patients need access to up-to-date information from experts. We are frequently the front line of information-gathering and -dissemination. While a doctor might come across one or two patients with a particular rare disorder during the course of his or her career, we know ourselves, we are our own investigators, and we thirst and hunger for disease-specific knowledge - for ourselves and others like us.

This post is a call out to medical journals, both independent and databases alike: Please consider a policy of open access for rare disease patients and advocates. It is highly unlikely that you will be met with a flood of millions of applicants. Rather, you will most likely be met with a limited number of hardcore rare disease detectives - patients who, through the acquisition of knowledge, are simply trying to improve their quality of life.

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Comments (6) -

Carolyn M Wagner
8:33 PM on Thursday, June 26, 2014

I've found that my GP, after 14 years, either knew nothing of my condition or didn't want to deal with it. When I asked him for a referral I was told I was too old for it to do any good.  I'm 67.  I just want a better quality of life and through research I know it's out there.  Thank you Yoni for putting it into easy to understand words!  Excellent!

Catherine Webb
9:52 AM on Friday, June 27, 2014

Your case for open access to medical journals is well presented here.  Thank you so much, Yoni Maisel.  

You inspired me to relay your article to UCSF Medical Library, a State and Federal tax-dollar supported institution, which I believe should allow (free) public access to journals and research publications.  National Library of Medicine should do the same.  

Along those lines, it seems all research (& and subsequent reports) sponsored by federal dollars should also be free to the public.

Time to write our elected representatives!

Catherine Webb
10:26 AM on Friday, June 27, 2014

Here is what UCSF Library said in reply to my email to them today:  

"UCSF and the University of California have adopted an Open Access policy.  We actively encourage authors to publish in Open Access Journals. See http://doaj.org/ for a list. This is a good start
but not a complete answer.

Please see this link: www.library.ucsf.edu/services/scholpub/oa/policy

Are you aware of the NIH Public Access Policy?: http://www.library.ucsf.edu/services/scholpub/nih ."

Maybe helpful, but likely "not a complete answer" as UC noted.

Gail Norris
1:18 PM on Friday, June 27, 2014

This is for Carolyn Wagner: I am 66 and was diagnosed with CVID about 3 years ago. I see an immunologist; this is not an area where we should expect a family physician to help us. It took me 2 years of asking then demanding a referral before I was referred to an immunologist. If your doctor thinks at age 67 you are too old, fire him/her and find a new one - this is outrageous. Do you need a referral because your insurance requires it? If not, research immunologists in your area, or post your location and ask others for recommendations.

Carolyn M Wagner
7:56 PM on Friday, June 27, 2014

Thank you Gail. I do have a great immunologist who diagnosed me in "97" with a form of PIDD but even he says it's one that doesn't have a diagnosis name as yet.  I'm on sub q Hizentra 10g a week.  However I have an Apical Aneurism which latest research shows that all those they tested had a Lamin A/C or LMNA mutation, which is common with MD patients. I also have many other symptom that go along with it.  I don't have to have a referral for another doctor but MDA requires one.  First I have to find another doctor that won't take his negative feelings out on me about Medicare.  I know from talking to MD that some relief is available.  I think I just happened to have a doctor who resents patients being able to do research!  Thank goodness for those who really want to help their patients!

Phil Harry
7:44 AM on Friday, August 01, 2014

I am fortunate to have an MD that sees me as "an interesting case".  He double books office appointment time with me and he has told me he pulls my file once in a while to look it over again, and researches anything in the medical field that could be pertinent for me.  He said he gets bored with the run of the mill Parkinson's and dementia cases.  He likes to study up on my MMN, as I'm his only case.  It breaks his routine up.

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