The small news is that I formally joined Patient Privacy Rights as chief technology officer. I have been an extreme advocate for open data for years. For example, I’m a card-carrying member of the Personal Genome Project where I volunteer to post both my genome and most of my medical record. PPR, on the other hand, is well known for publicizing the harms of personal data releases. These two seemingly contradictory perspectives represent the matter-antimatter pair that can power the long march to health reform.
The value of personal medical data is what drives the world of healthcare and the key to health reform. The World Economic Forum says: “Personal data is becoming a new economic “asset class”, a valuable resource for the 21st century that will touch all aspects of society.” This “asset” is sought and cherished by institutions of all sorts. Massive health care organizations, research universities, pharmaceutical companies, and both state and federal regulators are eager to accumulate as much personal medical data as they can get and to invest their asset for maximum financial return. Are patient privacy rights just sand in the gears of progress?