The incredibly immense information inefficiency: health care edition
Yesterday marked the day when Alphabet overtook Apple as the most valuable company in the world. In today’s newspaper, I read an article about how this reflects a deeper current in the global economy and the world in general: for the first time in history, a company that “hardly doesn’t produce anything you can touch with your hands”[sic]. Instead Alphabet creates value by building algorithms to source, analyse and structure data more efficiently.
In the last years, I have often wondered about and on some accounts personally suffered from how inefficiently we manage our data in many aspects of our life. Ever since, trying to find ways to improve the efficiency of society’s data management has become a passion for me. Every day at work I am trying to make a subset of the world’s data more accessible with our team. It astonishes me how we as individuals have very little control about our personal data in some of the most important domains of our life.
“You can have data without information, but you cannot have information without data.” Daniel Keys Moran
Today, I want to start to structure my thoughts and insights of the last years to a) keep proper track of this information for myself, b) gain more knowledge by engaging with smart people all over the world and c) contribute to other people’s insights by providing information they might have not yet been exposed to. Be warned: I like to write anecdotally sometimes.
The black holes of personal data
In my personal analysis, the biggest inefficiencies for the average citizen living embedded in a First or Second World society lie in:
- personal health data (topic of this post)
- personal financial data (topic of the next post)
The journey started in 2008 when a part of the cartilage of my kneecap got torn badly during sports and had to be surgically removed. After my surgery, I embarked on a series of visits to different doctors because I kept having troubles with my knee. Every time I went to see a new doctor, I had to start at zero and go through various examinations again and again and again. No information was shared between my doctors. The MRI scan of my knee was not handed out to me because it is property of the hospital. They all came to different conclusions, ranging from advising me to undergo another surgery to telling me that I will never be able to painlessly do the sports I enjoyed the most again. Eventually (3 years later), I was able to get rid of the problem by rebuilding and strengthening the muscles around my knee carefully with the help of an “alternative” doctor. The pain and discomfort were gone.
“Primary care clinicians report that missing clinical information is common, multifaceted, likely to consume time and other resources, and may adversely affect patients.” Peter C. Smith
What sticked around though was the strong conviction that the countless hours I had spent in waiting rooms of hospitals and doctor’s offices had been wasted and could have been avoided. It motivated me to think of a solution for what I was sure many other people also have to suffer from. A few months later we happened to have a business plan competition at our university and I was able to convince a few fellow students that there was a problem to be solved: personal health records, or the management thereof.
We created a prototype and a business plan for a mobile application that allows every person, but especially those suffering from chronically illness, to safely store their personal health records: “Moprec” (Mobile Patient Record).
With this application we’d revolutionise European health care! Doctors would embrace it, insurances support it and patients love it!
We lost the first place to a team of students who wanted to create high-heel shoes that would easily convert into flats. Despite the setback (we still won a nice cash prize) I continued to explore the idea (my teammates lost interest over the summer break). I quickly learned that the health care industry is a highly political and bureaucratic one and that laws that have been designed in the name of the patient actually work against the patient. What does it help a person dying of a medical error in an emergency knowing that the data the doctors missed is stored safely on a piece of paper in some other doctor’s office? To what extent does the zealous bureaucracy responsible for data protection prevent doctors from being able to deliver the best care to their patients?
I firmly believe in the idea that every human being has the right to be in possession of all the medical records ever produced in their name. Furthermore, this data should be structured in a way that doctors always have the most important information readily available. Coming from a family of doctors I know how much doctors struggle with information overload these days and how much such a solution would improve the quality of care.
Yes, it needs to be done in a secure and regulated way. But it needs to be done. There are many great efforts already under way these days and I look forward to see the health care industry change in its core. Alphabet’s (and other’s) algorithms are here to stay.
All your data are belong to you.
