E-Patient Dave’s post about the Green Button idea generated a lively and substantive discussion in the Comments section. The idea of making it easy for patients to anonymously share their data online for the benefit of research is apparently one whose time has come. It has popped up and sparked discussions in several places in the past year or more, and there is at least one website that is already using a “Green Button.”
Give a Scan, a project of the non-profit Lung Cancer Alliance, allows lung cancer patients to share their clinical data with the goal of assisting researchers in improving early detection and treatment. The site was launched in June, 2010 and includes 15 datasets to date.
Reader David Clunie, who mentioned Give a Scan in his comment, has also created a prototype called the Patient Contributed Image Repository, where patients can contribute their x-rays, CT scans, and other images. The site hasn’t formally launched, but it is fully functional and offers pointers for others interested in creating similar sites. He “struggled with the concept of the contributor retaining control versus relinquishing it, and came to the conclusion that a donation (irrevocable) to the public domain was a viable approach, even if it might put some folks off contributing.”