Being diagnosed with cancer is horrible, not only because of the horrible disease, but the additional confusion caused by a whole new set of vocabulary. For a software engineer, words like “glioma”,”left-frontal lobe tumour”, “stage four” or “malignant” are incomprehensible and terrifying. For one Italian man, Salvatore Iaconesi, the ability to absorb information from his standard doctors wasn’t enough; feeling incomplete with his understanding he wanted to see if there were other options. Being a software engineer and TED fellow Iaconesi figured that an open source solution would be a useful way of allowing different cultures and expertises to find a way to help. After requesting his medical records in a digital format, he went about hacking, converting, and decoding them before uploading them to his website “artisopen source.net“, under the optimistic heading of “the cure”. The website splits areas of discussion into individual linked forums (not unlike subreddits) and all of the medical notes, MRIs, CT scans, etc. which are available for download in an open source format (although most of the writing is Italian).
The results thus far have been amazing. As of this writing, 200,000 people have seen the site, 90 medical professionals have shared their knowledge and suggestions. Others volunteered services, ranging from a genome sequence of the tumor, to a debate sparked in the Italian parliament about making patient medical records more open and accessible. Iaconesi has heard of different options for the surgery, received lifestyle advice, and received a huge amount of support. The occasional crackpot has also shared advice like “consuming the husk of a black walnut will kill the parasite in your intestines that causes cancer”, but as far as Iaconesi is concerned, the free flow of all information is the best way to find a cure, especially because for every such suggestion there are dozens of patients and experts who are able to filter out damaging suggestions. As of November 26th, the cancer growth has stopped, and Iaconesi is waiting on new test results (which will be posted to his website) to see whether or not to proceed with surgery.
A more open source approach to medical treatment could change the way we deal with serious issues, making second opinions much easier to get and reducing the number of harmful suggestions. Of course, anonymity and the removal of personal responsibility from medicine has many problems of its own.
For more information:
- Unencrypted medical devices may not be the best idea, a researcher has figured out a may to remotely control pacemakers, theoretically capable of massmurder.
- Many people are turning to anonymous predictive treatments as a way to prevent insurance costs, which puts clinicians in a bind.
- Wikipedia’s list of open-source healthcare software
- The Economist has an article on Open Source Medicine