The Scholarly Poor: Patient groups

Today’s focus on the harm done by closed scholarly publications is on patient groups – societies and communities of people affected by disease or working (usually voluntarily) on behalf of those.

First let me dispose of one pernicious opinion which I still hear: “no one outside the medical profession can understand medical literature”.

There is no reason why an intelligent dedicated literate person cannot understand medical literature. Not all of it, but very often enough for purpose. And if they are part of a larger group with varied knowledge and experience it is completely reasonable to expect that there is a high degree of understanding.

Most patient groups do not have free access to the literature. Larry Lessig (Creative Commons) has estimated that to read the most important papers relating to his daughter’s illness would cost over 1000 dollars. Remember also that it is difficult to tell whether papers are relevant just by looking at the “free” titles (and sometimes abstracts).

So closed access publishers effectively deny patient groups knowledge about their disease/s.

Here are two prominent volunteers who spend their spare time on patient groups. That I am working with to try to change access to disease information.

Graham Steel (aka McDawg, aka McBlawg) – a frequent participant at blogging / online / repository / everything meetings in UK and elsewhere and who I have known for some years. Graham is a “Patient Advocate” as that is what, in large part, has driven Graham to demand Open Knowledge. Graham was a co-founder of the CJD Alliance (http://www.cjdalliance.net/ ) and describes himself in “Patients Like Me” (http://www.patientslikeme.com/members/view/1644) :

Graham has several years experience of obtaining and sharing information between researchers and patients – and now Journals. The patient as always, remains at the forefront – always will.

Graham Steel (42) is a native of Glasgow, Scotland, and works as a property claims adjuster/recovery specialist.  Graham’s brother, Richard, was diagnosed with variant Creutzfeldt-Jakob Disease (vCJD) in April 1999 and died in November 1999 at the age of 33.

Graham joined the committee of the Human BSE Foundation on a voluntary basis in September 2001 and became a Trustee as of 2003 after the Foundation became a Charity.  Since September 2001, he acted as Vice-Chair.  One of his main initial and continued foci had been to develop and maintain the Foundation’s website. Graham left this organisation in October 2005.

Over the last few years, Graham has devoted much time learning more of the background of TSE’s and so called Prion disease, the current and emerging rationale of treatment issues/early diagnostic methodologies and maintaining/seeking contact with many researchers in several Continents. He has also devoted much time assisting in forging links between a number of CJD related support groups from around the world.

And Gilles Frydman – Founder of the Association of Cancer Online Resources ACOR.org – whom I only met this year. ACOR – creates an information community for cancer patients. Here’s a typical report (http://www.onconurse.com/news/activist_gilles.html ) (10 years old) which captures the practice and spirit. Some excerpts:

During his wife’s treatment, Frydman continued to participate on the list. He was amazed at the quantity, complexity, and accuracy of the information shared. The time and effort donated by the list owners and some members was equally impressive. Frydman found so much valuable information that he wondered why the emails were not stored so that the accumulated wisdom of the group was available for new members.

…

Medical information is now booming on the Internet. Some is provided by organizations with experience and integrity while on other sites snake oil salesmen hawk miracle cures to the unwary. Large numbers of experts–both lay and professional–subscribe to ACOR lists. If a member posts medical information, it is scrutinized closely, and requests for citations to the literature are often made. The quality of the medical information shared is very high. Frydman believes passionately in people’s right to research and make their own medical decisions. He said, “It is your body and your life. You have the right to do the research, talk to others, and make your own decisions.”

Note that ACOR has no special privilege in access to the medical literature – quite the reverse. They are among the scholarly poor – denied access to information freely given by scientists in their publications.

Graham and Gilles will be among those at the December hackathon on Open Research Reports – looking for ways to make more information available to people with diseases.