The term "democratization" of healthcare has come to mean greater access to, and control of, personal health data by consumers/patients. I support this position for two main reasons. First of all, federal and state laws make this right very clear. Secondly, patients need to take more personal ownership of their health in order to prevent or forestall "lifestyle" diseases such as cardiovascular disease and Type 2 diabetes. In order to achieve this goal, patients need broad access to their medical records. These same points were reinforced in a recent interview with Dr. Eric Topol (see: Exclusive Interview: Dr. Eric Topol on the Democratization of Medicine). Below is an excerpt from it:
[Patients] cannot get to their information and they are the rightful owner of their information.... [I]t started with doctors knowing best and patients shouldn’t get their information because it can hurt them or they can get sick from the information. That’s from the philosophy of more than two millennia, and that is what sets ups policies which constrain the abilities for people to rightfully access and have the rightful ownership of their data. It should be the other way around that “I have all my data anytime, I want it, and by the way doctor, would you like me to share with you!", rather than the doctors and hospitals owning the data....
...I don’t believe....[that confidentiality/privacy] concerns [about sharing health data with patients] are grounded in reality. I think there are technological solutions to dealing with privacy and security. For example, in Switzerland, there is a thing called “Health Bank”. The Swiss are notable for their banking capabilities and leadership and now they have HealthBank and every citizen can opt to have complete unfettered access and, more importantly, ownership of their data. If they can do that, why can’t Canada, the US and every other country around the world? It doesn’t have to be central, not necessarily. It can be set up for individual or family members. There is no good excuse here. They emanate, in my view, from the traditions and infringement of paternalism.
I agree with Dr. Topol that our current system in the U.S. of placing barriers to health record access is based on a long-standing sense of paternalism and notion that "doctors know best." These attitudes are in the process of changing. I also think that this paternalism is reinforced by the competitive nature of our healthcare system with hospital executives reluctant to make health data portable and thus facilitate the ability of patients to "shop" for higher quality, lower cost care. This is the goal of value-based care.
All of this helps to explain why countries like Switzerland have developed a "free, secure, citizen-owned, global health data transaction platform for research and safe data sharing and storage" (see: HealthBank). Right now, this is only a dream in the U.S. Unfortunately, healthcare executives have used data security, privacy, confidentiality, and HIPAA for nearly two decades as excuses for not democratizing patients' access to their own heath data. In fact, HIPAA has always required that patients be provided access to their personal information (see: New HIPAA Rules Clarify Patients' Right to Access Their Health Data):
The HIPAA Privacy Rule has always provided individuals with the right to access and obtain copies of health information maintained in provider or health plan records. Under the existing regulations, when a patient makes such a request, the provider or plan has up to 30 days to provide the requested access or copy; however, the provider or plan can take up to an additional 60 days if the information requested is stored off-site.