Give me some brief background about yourself and about Patient Privacy Rights.
I never expected to be leading this organization or ever even thought about that. In my younger days, I practiced full time as a psychiatrist and Freudian analyst for a very long time, until it became clear that things were happening in DC that would make effective mental healthcare impossible. Namely, that there were lots of different ideas being floated; for example, the Clinton healthcare initiative. There was a part of it that was going to require everyone’s data from every physician encounter be recorded in federal database.
Fast-forward to the HIPAA privacy rule. That’s what really convinced me of the need for a voice for consumers, because there really wasn’t any. What I’m talking about there is, of course, the change in 2002 that happened under everyone’s radar except for – and this is the is the laugh line – when the 3,000 Freudian psychoanalysts in the nation noticed that consent was eliminated.
In 2004, I started Patient Privacy Rights because there was no effective representation for the expectations and rights that the majority of Americans have for how the healthcare system is going to work. Namely, that people don’t get to see their information without consent. Since founding PPR in 2004, we’ve still been the national leading watchdog on the issues of patient control over information and even internationally. Our power has come because when we came to DC, the other people that were working on privacy, human rights, and civil rights recognized that because of my unique position as a physician and deep understanding of how data flows, that I knew what I was talking about.
We very quickly got a pretty amazing bipartisan coalition of over 50 organizations. That enabled us to put these issues and problems on the map.
We had some incredible successes in HITECH. Virtually all of the new consumer protections came from our group, including the ban on the sale of PHI, the accounting of disclosures, segmentation, the new requirement that if you pay out of pocket for treatment you should be able to block the flow of that data to health plans and health insurers. We were the ones that worked with Congressman Ed Markey on getting encryption, required stronger security protections, and worked with Senator Snow to get meaningful breach notice into the rules.
All of this work lead to the first-ever summit on the future of health privacy this past summer in DC. The videos and the entire meeting can be seen or streamed online at www.healthprivacysummit.org.
If somebody said you had to choose between accepting healthcare IT as it is today or going back to purely paper-based systems, which would you choose?
We’ve never been in favor of going back to paper…