In the vast majority of emergency cases for the vast majority of patients, I don't think one's medical history is going to be a significant factor in getting them out of the woods far enough to give an "encryption key."
How about just allowing me to register a checklist of what I think doctors should be informed about me with some federal database? A system that is centered around me, and my concerns, rather than just using my safety as a post hoc justification?
That seems logical in theory, but in practice, that is not actually how this kind of thing works. I know firsthand: I ultimately survived a series of differing and often unusual medical crises in my 20s, that I really should not have ultimately survived, individually or collectively, statistically speaking. I never actually pictured myself once, after turning age 18, ever being age 30. I never once believed that I would ever be 30, in my adult life. Now, every year after 30 to me is a gift.
If you do not think that something like this can happen to you: 7-8% of the general population collectively has some sort of a rare disease. Rare diseases can look exactly like a small collection of different common health problems that people with chronic illnesses may legitimately regularly acquire. It requires a lot of intuition, knowledge, experience, and foresight to actually get something like this right. This requires medical expertise and being an excellent clinician is essential. This is not a problem that software engineers can solve on their own.
Also, medical records are almost always littered with a ton of errors, that may seem minor to you, but in reality, they really are not. Considering the third leading cause of death in the US is considered to be preventable medical errors [1], which is appalling, you better being going through your medical records in detail, correcting each and every error (along with sharing the records--by giving physical copies--for security reasons--to the other provider--if they do not have full access to complete health records), if you plan on staying alive long-term, whether you are healthy or not.
We have a tremendous way to go on medical records and medical data, and it is really not something that AI can practically solve, in general, due to so many errors, bad datasets, and profound hoarding of data.
[1] https://www.npr.org/sections/health-shots/2016/05/03/4766361...
If it's life and death and I'm unconscious, it's unlikely they would be able to access my medical records regardless, given the state of healthcare data interoperability (I have a lot of experience in this area). If I am conscious, I can tell them where to get my records, whether they're in Random Hospital X's database, or my personal DB.
I tend to agree that in the average case there's no real downside to doctors not having my medical history.
You admit that medical bracelets are a good thing. But then you go off and say stuff like "it's unlikely they would be able to access my medical records regardless". What? It's not "regardless". We can fix that. That's the point of this thread branch.
Repeating myself here: one way to protect patient privacy is to issue everyone globally unique identifiers. Then use translucent database techniques to hide the important.
Currently, linking records across our heterogeneous systems, with all the data quality challenges, prevents data from being encrypted (in transit or at rest).
An "integrated system" has been something the NHS has been sinking money into for decades and getting nowhere with.
I cant go to my local hospital for some of my tests (post transplant related) which is 30 mns away by bus instead I have to go to another hospital which by public transport will take an entire day.
A while ago we had (these numbers keep changing as the organisations merge).
207 clinical commissioning groups (CCGs)
135 acute non-specialist trusts (including 84 foundation trusts),
17 acute specialist trusts (including 16 foundation trusts),
54 mental health trusts (including 42 foundation trusts),
35 community providers (11 NHS trusts, 6 foundation trusts, 17 social enterprises and 1 limited company),
10 ambulance trusts (including 5 foundation trusts), and
7,454 GP practices.
NHS Trusts and NHS Foundation Trusts are independent organisations. They have their own board of directors and non-executive directors. Foundation Trusts do to, and they have additional responsibilities to their members.
In Gloucestershire we have one CCG, one acute hospitals trust, one trust that covers MH, LD, and community care, we have an ambo trust that covers the south west, and we have a local authority that commissions drug and alcohol services from non-profit orgs, and then a bunch of GP surgeries on top.
This means they all make their own decision on software packages to buy, and a lot of that info is locked up in their system. While there's some commonality in software packages used (eg, lots of use of SystmOne) it's not always easy to get the information from one organisation to another.
If I am diabetic and see me GP's diabetes clinic, and then I am admitted to mental health hospital, it can be hard to get my diabetes clinic notes into my MH hospital notes.
I posted a twitter thread just today about an NHS organisation who employ someone to print out one database, and then to enter that information into another database. Have a read of the twitter thread, because there are a bunch of people who agree. https://news.ycombinator.com/item?id=23426262
Inter-operability is going to be big business in the English NHS for anyone who can crack it.
Edit: Not being a doctor, it's difficult for me to anticipate what sort of information doctors would consider relevant. Certainly there are some easy cases to anticipate, like allergies to penicillin or similar. And I think for things like that, people do get medical tattoos. But personally I'd feel far more comfortable if my doctors have my complete medical history available to them when they need it.