sliced bread…

Posted on Friday 9 September 2016

No matter how comprehensive the  back-up system for your computer, when lightning strikes, things get lost. After I got my new machine Wednesday afternoon, I commenced reconstituting things – reinstalling software, restoring backed-up documents, email files, graphics, etc. By last night I was pleased with my progress [though cringing at the thought of going through the email threads I’d missed in my three week exile]. But then I noticed something, my Bookmarks were gone with the wind. I apparently never included them in my backing up, and that was just that. I had an elaborate collection of folders where I kept frequently visited places – resources, web sites, places to remember in general. Oh well, and I started reconstructing it [Note to self: Back it up this time!]. The place I started was with Resources: ClincalTrials.gov, Drugs@FDA, the FDA ‘Orange Book", PubMed, my university ejournals, DIDA, psychrights, NIH RePORTER, etc]. Those are the places I haunt…

It’s hard to remember that the Internet as most of us know it is only a little over twenty years old. Tim Berners-Lee developed his hyper-linked text documents for CERN’s internal use in the early 1990s. Then Marc Andreessen introduced the graphic-based browser Mosaic [1993], and later Netscape [1994], and we were off and running. The capacity to store, retrieve, and search huge databases of information on the web came even later. My point being that the Internet still contains its own history. Many of the large data-based systems were built at a time when the technology was less standardized, so they’re hard to use. Plus, as soon as a system gets put in place, somebody thinks of something else to add. So most systems are layered with "add-ons", making them even more confusing. When my wife posted something about our lightning strike on Facebook, lamenting the troubles we were having getting things going, a friend commented, "Get a 12 year old." People who’ve grown up on the web just seem to intuitively know how to navigate its rapidly changing landscape.

ClinicalTrials.gov and anything having to do with the FDA [including Drugs@FDA] are examples of such difficult-to-navigate systems, particluarly the latter. Both were created in the spirit of transparency but have their own share of opacity. Sometimes, I’m amazed at what’s available from the FDA, but finding it [or if it’s there] can be a nightmare and contribute to a receeding hairline. Fortunately, others have the same frustration and are aiming to do something about it [see OpenTrialsFDA: Unlocking the trove of clinical trial data in Drugs@FDA and OpenTrials: towards a collaborative open database of all available information on all clinical trials]:

Well Ben Goldacre isn’t still 12 years old, but he’s certainly in the generation that can see the possibilities. And he’s hooked up with the right people. This is one of those ideas that many of us have had, but it looks like he and his colleagues may bring it off – an example for the saying, "best thing since sliced bread!"

Ben Goldacre has come under fire for including pharma and other commercial types in his projects – sleeping with the enemy. The fear is that they will become Trojan Horses that will corrupt the enterprise from within. I’m in the innocent until proven guilty camp myself [with vigilance]. Like Bad Science, Bad Pharma, AllTrials, and COMPare, OpenTrials is a really good idea…
  1.  
    Eric
    September 10, 2016 | 5:36 PM
     

    I share the fear that they will corrupt any enterprise from within. Their track record of deception is so consistent, and the power of money that they wield is so enormous, that any collaboration is very risky.
    For a more sophisticated critique, I strongly encourage people to read the book “The Corporation” by Joel Bakan, or watch the documentary https://en.wikipedia.org/wiki/The_Corporation_(film)
    It has a fascinating question, that since corporations are legally a person, what sort of person are they? What are the characteristic behaviors and morality of a corporation? It draws heavily on the work of Dr. Robert Hare, the world expert on psychopathy, and developer of the Psychopathy CheckList, which I used extensively in my forensic work.

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