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CancerBase – first lessons

CancerBase.org has been up and running for a few months now. About 1000 people have signed up and many of them suggested at least one new feature. We are preparing to launch CancerBase 2.0 this winter, based on everything we have learned so far. Here’s just one example – dozens of people complained (nicely) that we downsampled their physical location on the map. We did this to ensure anonymity, which makes complete sense if you are approaching medical data as a scientist or a lawyer. However, some patients have a different perspective. Their point is that they are a real person with a real name and a real location, and they want everyone to know about them and their disease, and they want their dot on the CancerBase map to be right on their house. We added a checkbox to CancerBase so that everyone can now specify their personal mapping/geolocation preferences; since medical and other personal data belong to the patient, of course they should have complete control over how the data are used and displayed. It’s been amazing to work with everyone on CancerBase and we are growing quickly. Stay tuned for CancerBase 2.0, which will feature a common API and support several patient-centered applications.

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