Last fall I attended a conference that was focused on different aspects of privacy and security. One of the speakers claimed that a presentation by IBM a few years early stated that every year approximately 2.5 quintillion bytes of data was created. That is 2.5 followed by 18 zeros and this number is growing very quickly. I am looking for the actual source of those numbers, but I'm sure they are a good approximation. These numbers are way too big for a human to understand, but nonetheless, we are confronted by these numbers in our daily lives. This is because we have this global network, the internet, that links all of this data together in myriad ways and makes enormous amounts of it available to us and the institutions of which we are members (voluntarily or not).
Managing this data is hard to conceptualize. Ensuring that the data that each of us considers private remains private -- that is, only accessible to people or institutions which we approve -- seems to be impossible. Yet that is what is needed if the public is ever to be comfortable with sharing data. And healthcare and human services will remain stuck in the incredible inefficiencies of the 20th century data infrastructure with a disbelieving public if this doesn't change.
Currently, the feds (primarily SAMHSA Substance Abuse and Mental Health Services Agency), have proposed giving the public a way to control a small subset of healthcare data. A method that has not caught on to be polite. The scheme (primarily to protect substance abuse and mental health data, but there is a desire to expanded to all healthcare data) allows the patient to determine which data he or she may allow a physician to share. This is called segmentation. This is a very bad idea for many reasons:
- So far, this only applies to particular forms of the electronic medical record, namely the C32 and CCDA. Not all commercial medical record vendors support either standard, and those that do in general only support a subset of these standards.
- The majority of clinical data sharing takes place with messages that conform to the HL7 or Direct, neither standard supports segmentation nor does it look like they ever will.
- "Clinical Swiss Cheese" (thanks to Mark Chudzinski for coining this term). That is, with segmentation, a physician may never know if all of the relevant data they need to serve a patient is available to them. This provides a strong disincentive for a physician to participate in data sharing since inconsistent access to data raises large liability concerns let alone the concern of helping to heal a patient.
- Hidden conditions may be deduced because of other data that has been shared. For example (this has been cooked up to make it simple), let's say you have a heart condition that you don't want anyone including say an othopedic surgeon to know about. But the surgeon needs to know the meds you are on and sees you are taking aspirin once a day. That would be enough to make it clear you have a heart condition.
- Patients may not feel comfortable deciding what data to share or even if they do, they may not make choices that are wise.
- Physicians are already functioning under the Health Information Privacy and Portability Act (HIPPA) which makes it illegal for a physician to share data outside of the needs of treatment, payment or operations (TPO). Allowing a patient to decide what information a physician can or can't see would appear to tell the public that you can't trust your physician with your data. I fail to see how this can help improve our healthcare system.