Me and many others have done this for a long time. The Harvard Personal Genome Project [1] is a large open database of people's genetic and phenotypic information. Here is my profile: <a href="https://my.pgp-hms.org/profile/hu1247AF" rel="nofollow">https://my.pgp-hms.org/profile/hu1247AF</a><p>You can add your Personal Health Record to it.<p>[1] <a href="http://personalgenomes.org/" rel="nofollow">http://personalgenomes.org/</a>
I have a friend who is a medical researcher and it definitely seems they are stuck in the past.<p>In order to study something, he has to:<p>* Come up with a hypothesis that X may cause Y<p>* Request access to data about that hypothesis<p>* He is only given the data regarding his hypothesis<p>* He can then study whether his hypothesis has merit or not<p>We should be dumping these whole datasets into machine learning and having computers give us potential links to explore. Obviously there will be plenty of things that turn out to be unrelated, but it's also very likely the computer can find links that a human would not have considered.<p>I don't see it changing any time soon in the US, but I suspect other countries with this data will use it, and we'll find the next generation of medical breakthroughs no longer come from the US.
Thank you for sharing this. We (I) founded a company to help with several niche aspects of healthcare and the bureaucratic issues faced by administrations. We are finding success with data transactions, and while there are some companies out there who work really hard to make transaction engines, it's not very efficient, very expensive, and doesn't benefit the consumer at all.<p>My past experience as a software developer was, "Give me all the datum, and tell me what you need, then I'll make it work." I even worked for a very large EMR (probably the biggest on the planet), and getting a patient record out of their system is a nightmare, even though the foundation of their application is the patient record.<p>I'd love to converse more about what you're building, as we capture many unstructured documents and are now using ML to grab details out of these and match to criteria.
We should (as a society) consider open sourcing <i>every</i> medical record.<p>Medical privacy is ethically tricky. It (1) protects bad doctors, (2) makes it harder to develop treatments, (3) makes it hard for consumers to shop intelligently.<p>Medical privacy would be useful when negotiating cost of coverage with your insurer, but they have a contractual right to demand your complete medical record.<p>The best arguments I've heard <i>for</i> medical privacy are (1) you might not get a job if you're sick, (2) shame factor could prevent people from going for treatment and (3) you may not get a date if you have, say, herpes. (#3 is true but not necessarily a strong point from a social standpoint).
This is a risky thing to do when the patient's name is attached to it. Insurance companies, salesmen, etc., could do quite a lot with such information.<p>I whole-heartedly support the general idea, and making a centralised database of things like this would be great. Such a database would probably make it easier to anonymise the data as well.
I'm really confused the purpose what this article's purpose is.
You first talk about the issues with clinical trials then you throw in a tidbit of you just feeling like putting your medical records on public because you couldn't find many open medical records?
You can view the CDA (xml) documents here:
<a href="http://intelsoft.com.au/challenge/index.htm" rel="nofollow">http://intelsoft.com.au/challenge/index.htm</a><p>CDA are xml document conforming to a schema specified for medical documents.
picnichealth could easily add a "opt in" option whereby patients can opt their data into to trials. Institutions could pay for access to all this curated data to use for testing or recruitment of patients.