The President’s Council of Scientific Advisors (PCAST) report on health care IT points out that “A patient cannot make meaningful privacy choices unless he or she understands the flows and uses of information and can therefore make informed choices. That is not the reality today… While facetoface counseling on privacy choices should be available whenever choice is either required by law, policy or practice, most patients will probably educate themselves on the issues and make privacy choices through a web interface, where they will also be able to change their choices at any time… An important point is that, when patients have a meaningful opportunity to choose, a patient’s choices will be persistent, that is, continuing until changed. Most patients ideally will have elected privacy choices at a time when they are healthy and competent. This is truer to the principal of informed consent than is a rushed signature at thetime of a medical emergency, or when the patient’s physical or mental competency is compromised.”[i]
We have developed a proof of concept prototype (http://sourceforge.net/projects/kaironconsents/) for such a patient privacy preference management system that could be implemented nationwide.
