Everyone assumes our medical records need to be private, but wouldn't it be better to have it all published and Googleable? Anonymously, of course, various identifying things could be redacted.<p>Just imagine all the innovation that could happen if hackers could get access to huge amounts of medical records! We could identify patterns of all kinds, find the specifics on treatments for people with the same problems we have, and who knows what else.<p>I'd rather have millions of people out there looking through my medical records, not just my doctor.
One past employer was looking to do such a thing. They handled electronic prescriptions, lab results and insurance claim filings. The premise was that pharmaceutical companies would be interested in long term longitudinal studies of patients.<p>I identified the highest risk to be the anonymizer system. I called it "sausagizer" because it is easy to turn cows into sausages, but hard/impossible to turn sausages back into cows.<p>One problem is that data entry isn't consistent or repeatable. So what might be entered as "John Doe" one day, might be "J Doe" or "Doe John" some other days. This is called "patient matching" and has been an area of interest for several decades. One paper discussing it is:
<a href="http://www.cecs.csulb.edu/~monge/research/thesis.pdf" rel="nofollow">http://www.cecs.csulb.edu/~monge/research/thesis.pdf</a><p>Most researchers in similar areas ended up getting lured into "bioinformatics" for the Human Genome Project. More prestige, more money and gene matching is suprisingly similar to string matching.<p>Sadly, most of the research in the area of patient matching "went dark" after 911. By "going dark" I mean a combination of researchers who used to publish, now no longer do; and companies that used to publish even white papers have disappeared from the market. One such was NORA from SRD. IBM ended up buying the company, and shortly afterwards, all web pages, white papers and even the whole website of SRD vanished (even from archive.org).
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It would be an amazing resource. However, you cannot really anonymize that kind of data because if someone knows only a few facts about your medical history they could discover your identity. Still, the benefits probably outweigh the risks.
The Personal Genome Project takes this idea one step further. <a href="http://en.wikipedia.org/wiki/Personal_Genome_Project" rel="nofollow">http://en.wikipedia.org/wiki/Personal_Genome_Project</a>