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Graham Steel has been involved in Patient Advocacy since 2001 and is a strong advocate and vocal supporter of Open Access, Open Data and Free Culture (interview). In the guest post below, Graham describes the importance of access to clinical trials, academic articles and data, as well as the personal events that led him to become what was recently referred to as an “Open Science Machine” .

The title of this post is a quote by Madame de Stael (1766 – 1817) which I came across when reading “Publishing Clinical Trial Results: The Future Beckons” by Wager et al [1] back in 2006, around the time that I stumbled upon Open Access (OA). It led me to leave my first comment directly linked to a scientific manuscript which I named “The Need for Change”. To quote from that:-

“In my role as a Patient Advocate, it is extremely important that patients are equipped with the most accurate and up to date information and advice. With the growing use of the Internet, most turn to this in a search for information. The likes of PubMed as ever is always a good start although the layperson may not know this. However, unless one has Subscription access to Medical Journals, one would only get limited (and very varied) information generally. (…)

With regards to publication of Clinical Trials, all of the facts should be out in the open if any real sense of progress can be made to benefit those in need, i.e., patients. In this day and age, we (members of the public) should have full open access to relevant information. The good, bad and ugly should be there for all to see and times have moved on from when people could “get away” with only publishing “good” results”.

Circa ten years ago, I had the privilege of meeting Sir Iain Chalmers and became more aware of the important work he has done (and continues to do) over the years in respect of greater transparency in medical research/clinical trials etc.

Please see the following F1000 video of Sir Iain from 2011 entitled “Fundamental Failings”.

Most recently, Iain was one of the individuals who set up the AllTrials campaign for registration of all clinical trials, which I support 100%. The campaign was recently featured on the F1000Research blog in this interview with Ben Goldacre.

Access to medical information does not just cover clinical trials. Patients are also interested in academic articles, which they can’t see if they’re behind a paywall. In an interview I gave last July for the PatientsLikeMe blog, one of the questions I was asked was “Why is OA important to patients?”.

In response I referred to PatientsLikeMe’s Dr. Paul Wicks with a 2012 guest post atPLOS Blogs entitled “Open Access Is Not For Scientists. It’s For Patients.”

Two key sections of Wicks’ post that stood out for myself most were:

“In the past six years, we’ve found that more and more patients are trying to access research studies written about them, including studies where they were participants. In addition, they are increasingly capable of understanding them. Yet closed access is locking them out of better understanding their conditions and their choices.”

And…

“As a society, we need to recognize that our understanding of disease doesn’t belong to science. It belongs to the patients (who are also usually our funders, by the way), and we should exist only to serve them.”

Frankly, I couldn’t have said it better myself !!

The motto I have used since day one is “The patient as always, remains at the forefront – always will”. May one refer to my post “Why I am an OA Advocate”:-

“I became involved in Patient Advocacy in September 2001 just under two years after I lost my brother to a fatal, rare neurodegenerative disease. During the early years of this work, I commenced the process of studying peer reviewed scientific, technical and medical (STM) research.

This namely involved paper copies of Toll Access (TA) articles passed to the support group I was involved with by ‘highly regarded’ UK researchers in the field. Whilst ‘we’ were able to share such STM research (with family members of the organisation) by post using “fair use”, I knew that Copyright restricted me from sharing any such material with a wider audience – the organization’s website which I became in charge 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 was, it was abundantly clear that being open was the main key to outreaching.”

Finally, in terms of open data, I completely stand by the likes of the recent post by Claire Bower, Digital Comms Manager, BMJ “Publishing articles without making the data available is scientific malpractice” :-

“As more funders and learned societies call for new ways to make research data more available, reusable and reproducible, it will be interesting to see how established and emerging platforms will work with researchers and publishers to make access to data as pain-free as possible”.

It’s very pleasing to see STM publishers like F1000Research, PLOS and NPG working with entities like figshare to open up data.

[1] Wager E (2006) Publishing Clinical Trial Results: The Future Beckons. PLOS Clin Trial 1(6): e31. doi:10.1371/journal.pctr.0010031