Hell medical data access problems are bad enough even when we aren't talking about innovation: simple problems in sharing data between different systems/providers leads to bad outcomes all the time.
https://www.techrepublic.com/article/data-quality-in-healthc...
So it's a case where fragmentation and regulation are already leading to bad outcomes for patients, and where innovation is suppressed because of lack of access, especially to population-level data.
Even without ai, imagine being able to identify various kinds of outbreaks by correlating nearby diagnoses in real time, and flashing the local nurses that there's a serious food poisoning outbreak happening fire their consideration when people call in with early symptoms. We should be able to do this easily.
We should protect people's information, but we also need to build a road to a better tomorrow. The current rules are, in fact, broken, and we need new rules which lead to better outcomes.
That said, my problem isn't that he broke the rules. My problem is that, when confronted about having broken the rules, he lied about it then retreated into "why don't you believe the mission bro?" As if his solution is the only possible solution to the problem.
He's full of himself, doesn't care about rules, and gaslights those that criticize him. His messianic do-gooder-ism a bullshit marketing cover for him doing what he wants.
Eh. We'd still be stuck with taxis, Prohibition, and 55 MPH speed limits if we followed this dictum. Not to mention paying taxes to the King of England.
The real trick is keeping personally-identifiable data out of the hands of insurance companies.
Strict compliance to rule following is relying on some centralized authority to set the rules.
Your argument would make for a low risk environment but also high tyrannical potential. Rules are created to protect the status quo — not to spur innovation. Rules are established by people in power and those people have a vested interest in staying in power. Rules should be minded but not necessarily respected.
As in all things, a balance. But to argue all for one way or another is folly.
HIPPA has seemed to create a view that anything related to medical care is the most secret information in all the world, when in fact it’s pretty useless to anyone but yourself and people that want your money in some way that exploits your health situation. HIPPA itself only really erects barriers between your health data and disclosure to insurers and providers without your consent.
Just add a irrevocable guarantee that they will never sell or transfer to someone who will sell any data and if they do the company will immediately dissolve and become encumbered with a debt of the highest seniority equal to all lifetime company revenues to the people whose medical data they have. The C-suite and Board of Directors must also provide a personal financial guarantee equal to their entire compensation package, and must provide sworn testimony yearly that they are engaging in no business deals which include the sale of private medical data.
Since they do not intend to ever use the data for bad purposes, they have nothing to lose by keeping their word. Literally no downside to them since they were not going to do it anyways and it provides peace of mind to the public, a win-win.
Post quantum Homomorphic encryption is one key element to make this type of system work.
Two pieces of legislation and guidance in 2016 and 2020 basically required that any EHR has to allow providers and patients to pull their records, which at first Epic was like “okay go for it, but the data model of those records is proprietary.” The government had to issue additional guidance that records must be exportable via a standard interface (e.g. HL7 FHIR), which extricates the records from any of the EHR’s internal data model.
The pre-FHIR/pre-21st Century Cures Act was pretty horrible for America’s biomedical research posture: it simply isn’t capable of doing the sort of national-scale research that e.g. the NHS system can do, which is especially valuable for understanding things like COVID and for doing research on any treatments/vaccines being used in the wild.
During COVID it became clear lot of Americans have this implicit idea that there’s a way for researchers to just “look at what’s going on” in the wild and there literally isn’t. It just recently went from effectively impossible (due to consolidation of EHR records and affiliated commercial interests locking them down) to now just very hard (due to privacy, data quality, data harmonization, and still commercial interests). That change happened via regulation and will open the door to fragmentation (while maintaining interop).
If the records were centralized by the government, the issues that we see now would likely not be as prevalent.
There would be other talking points and issues to be sure, but the point is there are many ways to 'centralize' information, even including, ironically, the technologies that are infamous on HN that "de-centralize" information.
No there isn’t. The rest of your comment can be safely disregarded thanks to you opening with this.
“We need to build a better tomorrow!,” we will, the people actually trying to within accepted norms. Not SV grifters who’ve destabilized our entire society and ended privacy all for ad revenue.
I realize that many will come to say that the homomorphic encryption capabilities right now require a long time and many CPU cycles to compute some plaintext equivalent, but there would still be a huge improvement in the time required to be notified in the world today.
Additionally, performing studies in academia would likely be a far better experience if the data was available in a single place, and aggregate information could be gathered with a single API.
Differential privacy has the same problem: users have to trust that it's applied appropriately, which doesn't help with the vocal group who say we can never trust anyone who makes their paycheck by touching computers, or anyone who lives in California, or...
I have a higher risk of death because health data handling sucks. That's a trade-off. You might like that the status quo is what it is, but it doesn't mean the trade-off isn't real.
I feel like we've built a church (or possibly cult) that had mantras of "Innovation at all cost. Liquidity at all costs...." among a few others. With no view whatsoever as to what the implications
And I seriously am starting to think that HN and general SV culture. Specifically here on HN, the number of times I've seen a justification end in one is those thought terminating cliches is legitimately concerning. The amount of reasoning that boils down to "this is good because it improves innovation. And because it improves innovation it is good." And not only zero thought on the implications of taking the action suggested - what seems like an unawareness that one should even consider the consequences of taking the action. It's as if "we've reached the 'innovation is good' stage of the thought state machine so the state machine should terminate and return success".
It's absolutely mind-boggling to me that anyone could post a comment on saying yes we should give up medical privacy and not even have a single sentence on the negative consequences of doing that. "Why would one need to think about the negative consequences? It has a positive consequence so clearly we should do it."
Is it a gap in CS education? General education? Is it the personality type of us engineers? Is it nature? Nurture? Both? Is it social? Others don't step in to provide that feedback when it happens? How do we even approach it?
Wholly getting rid of medical privacy is obviously a bad idea. But perhaps we could agree that there are research purposes where greater access to data would be helpful, and that creating exemptions under certain circumstances could help on the research side. (Eg, the data is securely silo'ed and access restricted, and stays inside the research org only.)
(It's mind boggling to me that people have such poor ability to think in anything but stark binaries. It's a total failure of critical thought which degrades the quality of policy discussion. How do we even approach it?)
I don’t see how your particular viewpoint is any less "binary" than the other one. Collectivism or individualism is the binary option, where you land on the collectivist side of the coin.
It's mind boggling to me that people still resort to ad-hominem attacks when discussing viewpoints here on HN, when it's clearly against the rules. How do we even approach it?
HIPAA regulations also allow researchers to use de-identified data.
https://www.hhs.gov/hipaa/for-professionals/privacy/special-...
The argument isn't so much about how to go about technical progress but who and how to trust a Suleyman, or a SBF, etc. Some will do the hard work, meticulously build both pre- and post-regulation products, diligently deal with stakeholders, and succeed or fail to move the market. Being comfortable with saying divisive things on-the-record is a pretty key lapse in rigor.
Why?
Because I have a chronic issue and without mass data analysis no one will solve my issue.
You can dislike him but he faces the consequences and it's not necessary his job to appeal to everyone.
I've never understood the privacy boner. Sure, people can abuse information - can exploit or punish based on it.
But there are also so many positive uses of information. Research, understanding, a fuller picture of the world, helping people.
The need for privacy feels antisocial and backwards to me. We're not living in a totaliarian state where ppl get killed for tweeting the wrong thing, so let's not act like it. Part of maturing is accepting others for the good + bad, and you can't do that with a wall up.
In the seven years since that call, Suleyman’s wide-eyed mission hasn’t shifted an inch. “The goal has never been anything but how to do good in the world,” he says via Zoom from his office in Palo Alto, where the British entrepreneur now spends most of his time.
Thanks, I hate him already.
A messianic SV hand waver who doesn't care about anything but his special mission, doesn't care about breaking rules, and reflexively gaslights people who complain. As if "Why don't you support the mission bro?" is a reasonable response to "you should protect people's information."