I did re-post this to my WP blog a couple of years ago but it was worthy of an update.
I decided to rewrite this post after receiving this tweet from Dr Martin Eve:-
@McDawg this, on my experience of needing open access at a time of critical illness, might chime with you https://t.co/gfSL05942k
— Martin Paul Eve (@martin_eve) April 7, 2016
I would very much encourage everybody to read his compelling post Open access in a time of illness
Why does Open Access matter to me?
I became involved in patient advocacy in September 2001 just under two years after I lost my brother Richard (who was aged 33 at that time) to a fatal, rare neurodegenerative disease (vCJD). At that time period, the prognosis of the disease was grim to say the least and with no treatment on or under the table, 9 months after the official diagnosis of his condition, it had gone downwards so much, we as a family were allowed under Scottish Law (with approval from his GP) to let him go.
The situation was so rapid, it didn’t occur to any of us to declare anything but defeat.
Graham & Richard Steel 1999
That was the history to the start of this post but not the point of writing it.
Two years later…
We (family) were approached to become more involved in a related support group. Dad declined, I agreed and took up the post of Vice-Chairman, a fairly daunting task at the age of 33.
During the early years of this work, I commenced the process of studying peer reviewed scientific, technical and medical (STM) research in detail for the first time.
One of the first questions I was asked by the organizations Secretary was “Should we send scientific papers to family members, they’re quite complicated?” Me, “Well, I think we should give them the chance to look at relevant papers. Some might actually be interested in reading them, we should at least give them that opportunity rather than deny them”.
As Dr Eve touches upon in his post:-
Namely, that there isn’t a public for this material because it is specialized in both its wording and its content.
This is total nonsense and I really can’t stand it.
I completely agree.
This namely involved paper copies of Toll Access (TA) articles passed to the support group (which then became of Charitable status) I was involved with, by highly regarded UK researchers in the field in question. Whilst ‘we’ were able to share such research (with family members of the organization) by post using “fair use”, I knew that copyright restricted me from sharing any such material with a wider audience – the organizations website which I agreed to take over the handling of.
Despite this restriction, simply by placing as much information online in an open manner wherever possible, in the space of year, traffic had increased by over 4000%. As such, even before I knew what Open Access (OA) was, it was abundantly clear that being open was the main key to outreaching.
During this period, one of our three Scientific Advisors (Prof. Sarah Tabrizi) made me aware of PubMed.
After leaving that organization in 2005, I wanted to continue my patient advocacy work with broadened wings and become involved in other issues.
When did I become aware of OA?
Mid 2006. Up until the day in question, I had a pretty simple template email system in place to request PDFs of TA manuscripts directly from authors.
On the day in question, I noted from the Abstract of the Manuscript that I was looking for, there was a link to the full article. I had never seen a full paper online before. I had been of the view that all such content was locked behind an online paywall.
PLoS Pathogens was the first OA Journal that I came across.
Not only could I access the Manuscript I was looking for and had requested, but the real eye opener was that I was able to access the entire Journal online for free! And not just that Journal, but I had stumbled upon something extremely significant.
OA was a dream come true. Until then, I had sent out ~1000 requests directly to researchers for their paywalled PDFs. 90% of those requests were happily fulfilled. At say £30 a paper, that would have cost me £30,000.
I did on one occasion burn a substantial number of these to CD-r at say 1 pence a copy (only a handful of copies were made) and hand over to CJD International Support Alliance (CJDISA) in my remit as their Information Resource Manager. I was subsequently advised by a Librarian that this was a breach of publisher copyright.
As I said in this interview:-
One of my main eternal frustrations remains not being able to share my extensive library of papers due to Draconian copyright restrictions. Creative Commons is a dream come true….. Indeed, I’m wearing one of my PLOS t-shirts right now =) Prof Lawrence Lessig, you remain a STAR !!
Why should scientific and medical research be an open-access resource for the world?
To me, it makes so little sense* in this day and age to carry out and share STM research in a closed environment.
*Unless you are a traditional subscription based publisher of course.
May I quote in part, Associate Professor Bevin P. Engelward, the winner of the 1993 Nobel Prize for Physiology or Medicine from this 2007 PLoS Biology article:-
…In an age rife with the potential for infectious pandemics, bioterrorism, and toxic environmental calamity, and at a time when we need new ways to cure terrible illnesses, public access is our society’s compelling answer to accelerating the best science possible. This advance is much needed, both by researchers working in academic settings and in the private sector. Indeed, we should demand no less. We invite our fellow scientists to join in the demand for open access to biomedical literature.
Science, progress, societal benefits from that is a pretty concise focus.
Indeed, here’s a shot of Peter Murray-Rust and @McDawg discussing their forthcoming OA related Manuscript in London, August 2008.
(Image c/o Joe Dunckley’s sciblog Flickr stream)
What I do to support Open Access, and what can others do?
Simple. Spread the word.
My most blogged about post to date is precisely about this.
The blogosphere / and much more now, social media is an astonishingly great place to share and discover information. I’ve blogged fairly extensively about OA since I started blogging late 2007.
I’d like to close with this, again from Dr Eve.
What I’d like to close with here is that when worlds collide, interesting things happen. I remain dedicated to facilitating open access in the humanities disciplines, even when nobody needs this in a life-threatening circumstance, although I have argued that such circumstances do exist (in Open Access and the Humanities). But for me, the patronizing arguments that either everyone who needs it already has access or that there is no audience for OA can easily be countered by stories like this. We need open access. It makes the web a far better place, one where patients can turn to find high-quality material that can help them make sense of their conditions, one where others can turn to help them make sense of their worlds and cultures.
—
The musician in me cannot omit something poignant on this post. As such, here’s McDawg’s favourite mix of Peter Gabriel’s Shock The Monkey arising as a result of this competition. Such a mix was technically out of bounds for me at the time, but a friend in Portugal offered to assist on my behalf and did.
Peter Gabriel fully supports initiatives such as Creative Commons, The Open Society Institute, Students For Free Culture etc.
McBlawg 
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