Owning one’s health data

Piali De, CEO, Senscio Systems

This pandemic has taught us many things. One lesson that keeps coming back to my mind is how critical it is that we, the consumers of healthcare, find a way to manage our own care. In the coming years, our current heath system will go through major upheavals, trying to set a new course where there is more focus on keeping us healthy than on treating our illnesses. 

​While we are in this chasm, we need to quickly find ways to become the captain of our healthcare.  A problem that we immediately face is that we do not possess all our health data. Our data is fragmented in many health record systems, none of which we own. We may be able to look at some of that data but we cannot share it with whomever we wish. We cannot study it in its entirety. We cannot ask an expert to fully analyze our health. The best that we can do is try to piece together a partial picture from glimpses at our health, leaving much to our imagination. This situation reminds me of the story of the seven blind mice: partial glimpses usually lead to erroneous conclusions.

Each of us needs our own electronic health record (EHR) system, in our possession with full control over it. Our own EHR will draw its data from many EHRs owned by our many healthcare providers, including hospitals, doctors, pharmacists, and counselors to name a few. It will also hold data about my health that I put into it. The responsibility to keep my own records complete is mine and it comes with the privilege of being able to use it as I wish. Surely we will need some tools, and maybe some help from others. But it will be exhilarating to take this bold step of becoming the stewards of our own health data, which gets us ever so closer to becoming the captain of our own healthcare.