Dr. Iltifat Husain’s opinion is at the end of this article
Medical information has been scattered amongst a wide variety of databases in diverse clinical settings, making it virtually impossible for individuals to gain access to it when needed. In a commentary published in Nature Biotechnology, Leonard J. Kish and Eric J. Topol, write that patients have the right to own all this data and to be able to store it in a centralized location for easy retrieval.
“We propose here that the key step to liberating personal health data and realizing their true potential in human research and clinical practice is the provision of data management systems that give individuals the right to own their own data,” say Kish, a patient, and Dr Topol, from the Scripps Research Institute and Scripps Health. But before this information can be deposited in their proposed management system, several obstacles must be overcome, according to the authors. Healthcare provider organizations have to stop hoarding it, and state laws governing the possession of medical data need to be rewritten.
In the US, a great deal of patient data is locked in proprietary electronic health records, and according to the US Office of the National Coordinator of Health IT, this has resulted in “information blocking” on the part of some EHR vendors and providers. Kish and Topol also say that in 49 of the 50 states, the data are owned by doctors and hospitals. This clearly needs to change, they believe.
In their view, the paternalistic era in which clinicians “protect” their patients from unnecessary access to this information, doesn’t fit today’s activated patients who are “are fully capable of possessing and managing their own data, a capability that not only increases their sense of well-being but also enhances bonding with their physician.”
The authors suggest a few possible models for this patient-owned data management system. Switzerland already has an arrangement to accommodate individual ownership, call Healthbank, which is owned and operated by citizens. It allows users to store, manage, and share their personal health information free of charge. Another approach would be to use the technology underlying bitcoins.
Kish and Topol have coined the term “unpatient” to describe their new model of medical data ownership and insist that its time has arrived.
Dr. Iltifat Husain’s take on this:
I think many physicians would agree with Kish and Topal that patient’s need more access to their health data. My issue with the whole “unpatient” call is how physicians themselves are painted as being paternalistic and patient data mongering. I’ve been unable to find a published scientific survey that shows physicians feel patients shouldn’t own their own data. Yet Kish and Topal, while specifically at times calling out “government healthcare” workers, still broadly paint all physicians with the same brush.
It’s easy to castigate physicians as being paternalistic about patient data –- especially if it means you get a pat on the back by patient advocates. Why patients don’t own their health data is a mixture of outdated government policies mixed in with a multibillion-dollar electronic health records industry (ala Epic Systems) wanting a competitive edge by making data silos. The latter is the biggest culprit — and I was disappointed Kish and Topal didn’t actually call out the elephant in the room that now has records on over 50% of the patient population.
Physicians would love if patients controlled their own health data. We have no pleasure in having to request patient records from another hospital and waiting for hours. It slows us down and makes the patient experience horrible.
So let’s make sure we’re aiming our angst at the right people – the data systems and companies that actually hold the patient records. And let’s stop playing the “physician paternalism” argument every chance we get. The millennials have become doctors and we’re not old school.