Good news: I can share with you a complete functional and business blueprint for how to make a personal portable electronic medical record.
Bad news: The plan is from 1994 and almost no progress has been made toward any of the goals set forth 25 years ago.
A slide for the Guardian Angel system appeared during a 25th anniversary celebration for a health care informatics lab that I played a small role in starting. From the big blueprint:
Current health information systems are built for the convenience of health care providers and consequently yield fragmented patient records in which medically relevant lifelong information is sometimes incomplete, incorrect, or inaccessible. We are constructing information systems centered on the individual patient instead of the provider, in which a set of “guardian angel” (GA) software agents integrates all health-related concerns, including medically-relevant legal and financial information, about an individual (its “subject”). This personal system will help track, manage, and interpret the subject’s health history, and offer advice to both patient and provider. Minimally, the system will maintain comprehensive, cumulative, correct, and coherent medical records, accessible in a timely manner as the subject moves through life, work assignments, and health care providers.
This would be awesome to have today and yet we are as far away from it, I think, as we were in 1994. Sobering!
Related:
- the higher-level project web page, lovingly preserved by elves at MIT
I worked on a similar project at a startup funded by Blue Cross and Blue Shield of Maryland in 1986/7. It was based on the idea of storing one’s medical history on an optical storage device the size of a credit card. We spent several years designing and implementing software to track medical histories on that card, only to find out that the cards we were using weren’t reliable. The project folded after that. This idea seems to be a holy grail.
What always happens with those systems now? The parent company claims your data is worth $80 billion on its balance sheet. It’s bought out & puts the money into real estate because it’s a safer investment than cash. You become homeless because your own data forced all your neighbors out of their homes & into the renting market.
Obama always says if you like your Beto you can keep your Beto!
Toucan always says you can keep your derivative pointless talking points!
I have never expected anyone to show such a deep hatred of Obama that they will lose their cool whenever his name is mentioned.
Have you, Sam?
M: I think toucan sam loves Obama, who has provided him with years of great material (though https://youtu.be/u2pZSvq9bto is probably the best; “Obama speech oceans receding, planet healing”). Almost every American loved Obama, who soothed us with the idea that our problems would be straightforward and inexpensive to solve. The same way that we love Mayor Pete today.
“The Economist” published an article about doctors refusing to adopt new technology. It was replete with quotes from doctors about how – while they acknowledged the tech might be beneficial – they were too busy with patients to change their practice and workflow, and doubted it would make much difference. At the end of the article, The Economist revealed a twist: the article was originally published in the 1800s and the new technology was the stethoscope. Some mindsets never change.
The important biometrics have been known since the 1930s. A life history of them is useless. Records are useless. If somebody feels sick, take measurements. Self reported ill health is much more predictive than tests. If somebody shows up feeling sick, measure prolactin and cholesterol and so forth.
The problem is who owns the medical information. The patient should own it, but we don’t. Also, while medical companies can easily share EMR information with each other (hospitals, doctors, insurance) through HIPAA EDI, HL7, and file transfers, they cannot and will not share with patients. My primary care physician died about 9 years ago of a heart attack. He was about my age at the time (mid 40’s). We went to church together and he was a personal friend as well. His widow sold the practice to another doctor. I wanted to go and “collect” my medical records from the new doctor, but was told it would cost me $200 to get a copy. The new doctor tried to pressure me to start seeing him, but I refused. I left the records there, and went with a different doctor, a colleague of my old doctor who left the practice after it was sold. He tried to request the old records, but ran into the same $200 demand. I feel strongly that my medical records are MINE, and that I should be able to walk into any facility and collect them, and not allow the facility to copy them, provided I (or my insurance) has paid the bill in full. I should not have to pay a dime to collect them, and if my bill is paid, I should be able to take them and not leave a copy. I’m happy with insurance or a practice or hospital retaining a copy if there is a real business need like billing. I’m not happy with them selling the info to marketing companies. I think the technology definitely exists to do this today on Apple and Android phones or cloud. It’s the legal issues that have to be worked out. And they never will be. Insurance and healthcare providers have too much paid influence with politicians and can and will effectively argue that patients are “incapable” of effectively managing their own health records. That may be true for some part of the population, but it is not true for people like me.