Data, ePatients, Electronic Health Records (EHR's) and the Future
While teaching a session on Twitter and blogs for healthcare at the Center for Public Health at the Berkeley School of Public Health I met a two employees from Practice Fusion who invited me to their office to talk about their EHR on the web. During the course of our discussions I realized that I didn't have a good grasp of what kinds of laws or regulations would apply to patient data and the assurances of my hosts that they were taking their model from the financial services industry did not fill me with much confidence. I know trying to correct an error in my credit report was a labyrinthine process that took months and I'm not sure if it ever got cleared up.
In an effort to understand the data ownership and rights, I called Kaiser Wahab, an IP lawyer with many years of experience. He corrected my misunderstandings and added some thoughts of his own. He told me that according to the law, no one can own facts - the fact that you are diagnosed with diabetes is not, under the law, something that can be owned. The written RECORDS of the diagnosis and treatments a patient undergoes can be owned and therefore sold, provided there are no privacy laws that prohibit it.
I also talked to Will Crawford, a Health IT expert with Children's Hospital in Boston, who asked the question, do doctors realize the access and rights that they are giving to a private company? How comfortable will they be with their patient data, even if depersonalized and aggregated, being sold to the highest bidder?
Questions I have: Do we want a private company that is not being paid by our healthcare provider to have our health information? Do we want private companies that do not have to disclose any financial information helping to shape health data access policy that will affect us all?
Do we want to have access to aggregate health information to those who can afford it? How much of the access to this data that should be a public good be owned by a private entity?
In the new paradigm where the effective cost of digitized information is free, does it still make sense to stick to the old idea of having health information be concentrated in the hands of doctors, clinicians, insurance companies, and anyone that can afford it?
