Analyst firm IDC and EMC have released “The Privacy Index”, (here), which surveys our willingness to trade privacy for certain ‘benefits’. They measured a range of indexes shown in the picture above, but what is interesting to me is the ‘Medical Me’.
The question is if your data can enhance or save your life and you believe it won’t be misused, why don’t we insist on having our medical data available on-line?
Why am I such a staunch believer in the power of data to change our lives? Well the way I see it is that there are three changes happening, which I’ll summarise as eHealth, eSelf and eWell.
eHealth is the digitisation of the medical system. Once we have all the information in digital form, the opportunity exists to transform the practice of medicine, by using this data to assist the humans involved. Assisted diagnosis has already proven by IBM’s Watson, drug interaction checking has saved lives, automated continuous monitoring of ICU’s have been shown to reduce stays and improve outcomes. Just about every day there is a story where ‘digital medicine’ has impacted the practice of medicine.
eSelf is where we quantify ourselves, ranging from sequencing our DNA to instrumenting our bodies. Why? Because data changes behaviour! Just knowing that I didn’t walk my 10000 steps today will have me find more ways to walk tomorrow! Knowing that I’m susceptible to heart disease will change my diet and exercise patterns! In every walk of life people have been shown to respond to real-time data, just compare diver behaviour on roads with static vs the real-time speed displays.
eWell is the last step where the two parts above come together. After all what is the practice of medicine but pattern matching. Medical school teaches the doctors what is normal and what is not. So diagnosis is taking a set of symptoms and tests and matching them to what has been seen before! Wellness goes way beyond this, how do we use the information to improve quality of life, improve diagnosis, ensure efficacy of drugs used in treatment, etc. A recent example was the use of DNA test to detect a bacterial infection in hours, (here). Analyse and avoid rather than diagnose and treat!
Two examples of the power of data. In the USA cancer patients can elect to have their information shared and used for research (de-identified data). Having entered into the program their cancer’s DNA sequence is held in a database and compared to similar tumours. They then can access information treatments attempted and their efficacy against a similar cancer. Also if a new protocol is shown to be successful, they are alerted! Now in essence you are being treated by all the doctors involved and the particular treatment has been ‘tested’ before.
My second example is from dinner last Saturday night at a friend’s place. I was surprised at how well my mate was, as the last time we saw him he was in bad shape. Having successfully gone through prostate cancer treatment, he was left exhausted, lethargic, and could not work. After several months nothing changed, his doctors still insisted his symptoms were as a result of his treatment. But his wife consulted with Dr Google. (Dangerous I know especially for the worried well!) She found a number of discussion around his symptoms, and eventually convinced a specialist to check for cat scratch disease. A week later and after an apology from the specialist who said she was wasting her time, and a course of antibiotics he was himself again and back to work a week after that!
Back to where we started the IDC survey shows that overall out of the 15 countries surveyed, Australia is 11th in its willingness to share information. In particular just over 40% of people were willing to share their medical information, even although about 65% of them felt that the information would be looked after and used in an ethical way!
So back to my question if your data can enhance or save your life and you believe it won’t be misused, why don’t we insist on having our medical data available on-line?