Using communityto find a cure
How one man fought his cancer with the help of many, and won.
After being diagnosed with brain cancer, Salvatore Laconesi, felt as though he had disappeared. “You become a disease on legs” he said, in regards to the focus placed on the cancer and not the person. Instead, Laconosi sought after a cure for the whole person and not just the cancer. He did it with open source.
La Cura, the open source website he created, held all of his medical documents and scans for everyone to see. His goal was not to overstep his doctors, but to discover a whole body cure. “Cures for the body, for spirit, for communication.” In essence, a lifestyle cure for cancer.
Modern medicine is a passive experience for patients, hence the name. To be a patient, one must have patience. When you’re health is on the line, this position is one of helplessness. Open sourcing the process allowed Laconesi to get involved and educated about his disease. It connected him to over half a million people with input on ways to improve his lifestyle and wellbeing. Not to mention half a million people suddenly expressing concern for him and not just his cancer.
Unfortunately, The world is not so readily set up for open source. According to Laconesi, “Yesterday I went to get my digital medical records: I have to show them to many doctors. Sadly they were in a closed, proprietary format and, thus, I could not open them using my computer, or send them in this format to all the people who could have saved my life. I cracked them.I opened them and converted the contents into open formats, so that I could share them with everyone.”
The design of separate systems kept Laconesi from easily sharing the specifics of his diagnosis. What if instead records were shared with us automatically allowing us to become involved participants in our health? The La Cura project demonstrated that we as humans are able to take charge of our health and help one another find perspective. This active role leads to the answers that modern medicine cannot answer.
Have an active role in your own health.
- We rarely see our own medical records, would you understand yours?
- Use the power of cooperation to find new solutions.