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The Need for Change

Posted by ClinicalTrialsHub on 25 Oct 2007 at 16:05 GMT

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, many turn to this in a search for information. The likes of PubMed as ever is always a good start although the layperson would not know this. However, unless one is signed up to a number of Medical Journals, one would only get limited (and very varied) information generally. Some websites like PLoS however provide full access to Papers and I would hope that over time, more will follow this sensible method of operation. Articles in Science Journals do demand some effort from the reader; it's not like reading the newspaper! In CJD terms, the BSE Inquiry in 2000 highlighted a lack of openness and transparency by Governmental bodies leading to the death of many individuals (200 and counting) and requirement of members of the public to pick up the pieces and assist in the (ongoing) "damage limitation" exercise. It led to the justification for a Freedom of Information Act and the need for a Human Rights Act. 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. A very recent example in UK terms has to be the Parexel TGN1412 monoclonal antibody fiasco in London. We (the public) are assured that such events only occur "once in a blue moon" but I have yet to be convinced of such assurances. A few months ago (27th April), the BBC aired a real eye opener in the form of This World documentary "Drug trials outsourced to India". This can easily be found searching for "this world drug trials India". Even more recently, it was the BBC (again) who highlighted serious concerns about a MS trial "Concern over major MS drug trial". This can easily be found searching for "concern over major MS drug trial". Despite all of these issues, no-one seems to be concerned, and more worryingly, unwilling to do anything about this !! These are only the recent examples that I am aware of and clearly, there are bound to be more. In my mind, the above clearly demonstrates an abundant need for widespread change on dissemination of accurate information. Despite all of the progress in modern day technologies, we still largely remain in the "Dark Ages" in major aspects of medical revolutions. May I be as bold to conclude with some comments from one of our new EU (neurological) contacts:- "Thanks for your initial request and for the offer that we could contact you in the future if needed. Organizations like yours are the pillars of research in many areas that lack public attention and are more efficient in supporting good science than many public funding initiatives". I and the organisations across the World that I integrate with fully agree with the contents and conclusions of this very important article and feel that the opening quotation as below says it all really.

"Search for the truth is the noblest occupation of man; its publication is a duty".
Madame de Stael (1766 - 1817)

Posted 2006-12-11

Graham Steel
Information Resource Manager
International CJD Support Alliance
Competing Interests: no