Patients hoping for a treatment for their rare, terminal disease have a problem. Pharmaceutical companies are generally uninterested in creating treatments since the market is small and Independent researchers are stymied because hospitals will not publicly release the patient's data. Fortunately, patients are free to get copies of their own data and do with it as they wish.
So since I consider my patient data to be "source code", I am releasing it openly and publicly under a copyleft license. Copyleft primarily means that if a researcher chooses to input my data into some analysis (or other type of) code, I expect the combination of their code and my data to be open and public as well, and subject to the same conditions listed in the license. The differences between open source and copyleft are here (https://opensource.org/faq#copyleft).
To researchers: You get the general idea. Speaking for all patients: By making our data public, we hope to help you do better research. In return, we hope you let us know when you come up with somethng that helps us. Please honor that hope.
To rare disease patients: I hope this idea works. But even if it doesn't, it is still our data. As a group, we can collect it and have some say as to how it is used. Think about that. If you want to talk, I'm email@example.com.