show me the damn  code  numbers!…

Posted on Wednesday 18 January 2017

The background image is an iPhone photo of a spreadsheet opened on that little Linux computer in the last post, and the midground is a spreadsheet from my Windows computer. They’re both Open Source versions of OpenOffice, the free Office Suite that I use instead of Microsoft Excel [foreground]. The point of the graphic is that they’re basically the same. If I hooked that little $35 dollar machine to a full sized monitor I could do everything on it I need to do with ease. I don’t use the new Excel because I don’t like their "ribbon" interface and I can’t make the graphing utility do what I need it to do [I wonder if they changed it just to have something new].

Back in the early PC days, the software developers [Microsoft, Apple, etc] wanted to own their software through and through, make the code proprietary. The nerds and hackers of the world said ‘show me the damn code‘ and the companies said ‘hell no.’ There were lawsuits, and posturing, and all manner of haggling about whether computer code was intellectual property. For users, it was a problem because every new release [of something like Microsoft Word] meant that to get the new features, you had to buy it again or pay for an upgrade. And that extended to the operating system itself [DOS, OS]. It was a monopoly.

When the World  Wide Web came along, there was a different tradition. The hardware came from the government [DARPA] and the language that made it work [HTML] came from a think tank [CERN] developed by Tim Berners-Lee for internal use. The Browser used to read the HTML was Mosaic, and later Netscape [that was free, a version of Open Source] – built and maintained by volunteers. Microsoft wanted to grab the Internet, so they gave their Browser away too [Internet Explorer]. Now Google’s Chrome has jumped onto the mix. The tradition of Netscape carried the day and the Open Source Movement took hold – Linux, MySQL, Open Office, Apache server, etc and a whole lot of other very important stuff you can’t see. So the companies held on to their proprietary code and the home computer market primarily by building user friendly interfaces [and inertia]. As Linus Torvolds implied in the Ted interview, hackers, geeks, and nerds don’t do interfaces very well – and they sure aren’t marketeers. So now there’s a mix of Open Source and Proprietary software that’s actually mutually beneficial – a loose symbiosis of sorts. Android being a prime example.

This battle over Data Transparency with Clinical Trials and other scientific data strikes me as similar to those early days with computer code: intellectual property, commercial interests, competition, secrecy, etc. But there’s one difference that way ups the ante. It’s abundantly apparent that proprietary ownership of the data has allowed a level of sophisticated corruption and misinformation that is unequaled in the history of medicine in my opinion. So while there’s a real similarity to the computer code wars, the stakes reach beyond commerce and into the basic fabric of medical care. Have we learned something from Open Source and related initiatives that might help get things back in the road? Maybe…

  • PLOS [Public Library of Science] is a nonprofit open access scientific publishing project aimed at creating a library of open access journals and other scientific literature under an open content license. It launched its first journal, PLOS Biology, in October 2003 and publishes seven journals, as of October 2015.
  • is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. Learn more About Clinical Studies … including relevant History, Policies, and Laws.
  • PubMed comprises more than 26 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher web sites.
  • AllTrials/COMPare: All Trials Registered | All Results Reported. The COMPare project is systematically checking every trial published in the top five medical journals, to see if they have misreported their findings.
  • Rxisk: No one knows a prescription drug’s side effects like the person taking it. Make your voice heard. RxISK is a free, independent drug safety website to help you weigh the benefits of any medication against its potential dangers.
… and there are many more. As I list these resources, I realize how much the general idea of Open Source maps onto the effort to put a stop to the commercial corruption of our pharmacopeia [and vice versa]. Perhaps where we lag is that we’re still hung up on trying to get "them" to change, much like the early efforts to get the major software corporations to change. Is the lesson from this story that the hackers created an alternative system of their own instead of continuing to bang their heads against the stone wall? It seems to me that  Linux was more than the sum of its code. It was an organizing principle, and we don’t yet have a Linus Torvolds or his system – something to rally around. hmm…
    January 19, 2017 | 3:31 PM

    Yeah, I much prefer Open Office to Word as well, also use their version of Excel, though for much simpler applications.

    It’s interesting that many of my younger friends (and clients) understand the devolution– and I think it’s fair to call it that– of the end user interface as an integral element of modern culture. When I tell a 19-year-old that WordPerfect 5.1 for DOS, or even a stand-alone WANG word processor from 1984 could produce a simple business letter much faster than current versions of Word (and I do feel this is an empirically valid statement) I expect them to be surprised.

    They are not. The reaction is typically something like, “Yes, my folks and older friends have said that, and I can easily see how that could be true.”

    It’s really sad that Open Office is no longer being updated or supported– and that Microsoft has deliberately made encryption (essential for HIPAA documents) almost impossible for Open Office with the ridiculous .docx format. My own form of activism/direct action is to demand– whenever I have the mojo to do so– that I be sent word documents only in older, .DOC versions of Word. And I have never purchased a Microsoft product (that wasn’t bundled into hardware) in my life (or used a pirate copy. Even if it wasn’t against my ethics, why bother stealing private sector junk when open source is better anyway?)

    IMO (and I will leave out the “H” b/c I was a tech writer for many years) the dogma that commercial technology (and particularly software) continually “evolves” and relentlessly improves efficiency is a comically fatuous social construct.

    I’ve never been able to understand how folks suspend their disbelief for that one. I think it’s some kind of existential defense against chaos or death or whatever.

    Great metaphor for the battle over data transparency. I think

    January 19, 2017 | 9:51 PM

    One of the more intriguing posts you’ve written. While reflecting and googling about it (an irony in the last activity) came across this:
    Worth a read, including the comments.
    On another note: Linus and Linux interfaced with a large user/creator base with skills, time, and proclivities that are as central to its nature and existence as the original concept and Linus himself.
    A last thought: it is often referenced that individual MDs see thousands of patients over the years. Developing tools that could allow that individual MD to filter out biases, to do some of what trial structure and tools do but with their own ongoing practice, might be a new frontier? One missed by the focus on trials and the relegation of individual clinical experience to the label “anecdote” and “authority”? It’s something a individual MD could do. But it would require a hybrid. By which I mean that those sufficiently concerned about the biases inherent in individual clinical experience often prioritize trials, and those with a strong bias towards individual clinical experience often aren’t enormously concerned about such biases. I am NOT talking about the art of synthesizing trial information and ones own clinical experience. Am talking about a set of tools being developed that would achieve with ones own clinical experience more of what trials were trying to achieve in eliminating confounds and biases.

    January 20, 2017 | 10:01 PM

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