Open source principles applied to medicine.
by Colin Dodd
‘Open Wide…’ | Print Article | Newsweek.com
Their proposals are part of a larger trend to bring the medical system, which still runs on paper and pens rather than bits and bytes, into the 21st century. Many businesses, from IBM to Procter & Gamble, have embraced the Web 2.0 ideals of transparency and decentralized problem-solving—what technologists call “open source.” But is it a good idea to apply those values to private health matters? Electronic health records are a step in that direction, and some experts go further, arguing that if transparency and openness can work wonders for software, it can also benefit diabetics and Parkinson’s sufferers. A growing number of Web-savvy health-care practitioners are coming to a similar view: that making data about your health freely available to family, friends and doctors could enhance the quality of care.
SNIP
It’s also about gathering the collective wisdom, and making it available to researchers. “In the end, it’s the same as open-source software,” says Heywood. “If you can see all the information, you can correct the errors.” Drug companies and doctors are far from infallible, and in this way the PatientsLikeMe community serves as a useful check. The site is, in effect, building an enormous database of patient data that can determine whether drugs and treatments are having the desired effect.
Of course, such research is what economists call a positive externality—it doesn’t necessarily help the person doing the sharing. That might limit the appeal of transparency. But this is the era of the “overshare,” after all, where deeply personal information regularly makes it to blogs and MySpace pages. And the trend has two powerful backers: both Obama and McCain have released their health records to the public.
October 21st, 2008 at 1:04 am
This is not “open source” applied to medicine, this is “open personal information” applied to medicine. Open source ideas would be sharing technologies for treatments, etc and NOT holding them back for business reasons. THAT I do support, however I am NOT fond of this idea – I see every patient’s privacy in great danger. If it’s opt-in – like “Do you want to make these specific test results of yours available to research facility XYZ”, I’m fine. But I don’t see how you could possibly keep personal data (as a person’s health records are) confidential while making them open sou… oops, I mean “open data”.
What about the civil right for privacy?
October 22nd, 2008 at 11:56 pm
I fully agree with Chris’s comments above.
October 27th, 2008 at 10:15 am
This is nothing but a push to make it socially acceptable for people to post your health records without your consent. The problem with this idea? It creates bias unequivocally. Now your employer can decide against hiring you because you have X disease or disorder. Unless there are protections put in place that favor the individuals rights, this will be a mistake. Discrimination will start occurring because of family medical history. Not only that, they will start using your medical information to determine your worth. If they know you have a life shortening condition, they can dump you and leave you jobless with no recourse for rehiring. You see the downside of this? I do support this, but only with ABSOLUTE protection and guarantee to the individual that they can not be discriminated against in any way, shape, or form.
October 27th, 2008 at 10:21 am
In other words, you make it so that even if someone gains your health information, they can not legally use it to slander you, decrease you, or diminish you in any way. That should keep people from using to hurt each other, because if you don’t, they will use it to hurt each other, or make money off each others suffering.
November 30th, 2008 at 10:03 pm
Free and Open Source have been in progress in medicine for quite a while and in some ways pre-date the FOSS movement at the Veterans Affairs hospital system. Look for the American Medical Informatics Association Free/Open Source white paper which I authored in a week or so. There’s also Linux Medical News http://www.linuxmednews.com which has been around for 8 years.
December 20th, 2008 at 7:24 pm
Openness and Security
There is a difference between security and vulnerability.
A difference between the need for openness, honesty and the need for private confidentiality.
It seems that “Open Source” is about development delivery of services, solutions and products in an “open” honest manner.
Just because some solutions, applications in the medical field are developed and even delivered using open source principles does not also mean that a personal data and medical information is also “open”
There are sufficient security measures that can be taken to implement open source principles in the medical field and still keep personal data and medical information private.