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The TennCare Connect system—built by Deloitte and other contractors for more than $400 million
There you have the reason. The government software should be open source because
- People need to be able to make public officers accountable (Article XV – The society has the right of requesting an account from any public agent of its administration. https://en.m.wikipedia.org/wiki/Declaration_of_the_Rights_of...)
- You should be able to fire incompetent contractors, and replace them with someone else, for which open source code base makes it much more practical and the contractor cannot use any trade secrets clauses to make this impossible
Deloitte was a major beneficiary of the nationwide modernization effort, winning contracts to build automated eligibility systems in more than 20 states, including Tennessee and Texas.
So much tax payers money wasted.
I would go further and say that not only the software but also the execution of the software should also be open, akin on a non-financial blockchain database, with the rules, execution, and decision recorded permanently (under an anonymous ID, of course). Anyone should be able to easily replay the execution. This would allow for citizen monitoring of government actions. If not for this, at least a weekly export of all anonymized processed claims, plus the corresponding logic rules, should be made available on the web, similarly facilitating a local replay.
The problem with a scheduled export is that a corrupt state government will gladly change your records for you (in their favor) when you go to court. This is more difficult to do with a blockchain.
I would really prefer my health information not be exposed in any way, "anonymized" or otherwise, thanks.
I don't think you realize this already happens. It is already available to hundreds of organizations, both domestic and foreign. Any organization can license it really at a price. What I said would only democratize it, also mandating an appropriate level of anonymization which is currently inconsistent or missing. Also, think of the bigger picture, of the clues such data will yield for advances in healthcare.
I think this is plainly untrue in any of the situations relevant to what we're discussing.
Some "de-identified" health information can be used or disclosed without restriction under HIPAA, but it needs to genuinely not be possible to correlate back to an individual, which I don't think is something that's possible with what you're describing (at least if prior medical history and decisions factor into the execution of the program). Some health information can be released in the public interest (like for research) or for bettering healthcare operations, but that's not this either.
It might be worth taking a look at https://www.hhs.gov/hipaa/for-professionals/privacy/laws-reg....
This is excluding stuff like 23AndMe genome sharing / Ancestry.com law enforcement collaboration, which might be what you're alluding to, but I believe it to be irrelevant in this case.
What you say is a theoretical goal. In practice, despite good efforts, there is no hard rule imposed by reality that 100% of records will totally remain anonymized.
Maybe it's unclear why I've brought this up. I understand it's not possible to keep everything locked down in a way that prevents my information from leaking.
And as unfortunate as that is, that's not my concern with your original comment.
I do not want that problem made worse. I don't care if it's already kind of bad. I have no idea why the problem already being bad would justify making it worse.
I guess you forgot the part where you're a mortal human, and where biomedical data helps discover patterns to solve problems. Just you wait until you get old. Also forgot the part about exposing statewide corruption wrt claims.
I'm not interested in your snark. I'm aware of my mortality and of statewide corruption. Those are not good reasons to publish my health data publicly even in an anonymized form. The people who might be able to fix my mortality are already allowed to have my data (whether I'm happy or not about that is moot as you've made clear yourself). That does not change my belief that the scheme you propose for "exposing statewide corruption" is a bad idea.
You mean the ones that license it commercially? Their interest is not in fixing you; it is in exploiting you and your wallet, so please remember the distinction.
To really fix it (you), access to that data needs to be democratized. But since people (you) don't want that to happen, I guess mortality will remain in the cards. In the end, people (you) get what you deserve.
Yet somehow data brokers know every medical condition you've ever had and they sell it to anyone who will pay them.
See also: https://www.nytimes.com/2019/11/11/business/google-ascension...
https://www.scientificamerican.com/article/how-data-brokers-...
https://arstechnica.com/science/2019/11/would-you-trust-goog...
https://slate.com/technology/2022/06/health-data-brokers-pri...
If this is supposed to be some sort of "own", you're missing my point. I do not want my HIPAA-protected information going any further than it needs to, I do not want these practices to be encouraged. I understand HIPAA etc. are leaky, that people are inventing new ways to leak my information to people who want to buy it, and so on.
That is different from taking the pipeline of information directly from my insurance provider and firing it off into the public eye in a way that prevents it from being deleted or forgotten, even if it may be anonymized to some extent.
I understand the situation is not good. I want it to not be made worse. I'm not sure if you ignored the sibling thread where I felt I made myself clear.
I promise that I wasn't attacking you. More just commiserating over the sad state of the situation we find ourselves in as of right now.
I don't know what the solution to this problem will look like, but (like so many other solutions) I'm also pretty sure that it won't involve a blockchain.
Can you link where I can license this information?
If you offer to give $10+ million to any health insurance company or hospital IT company, they will gladly give it to you, plus more fees for updated batches. In practice it will cost much less if you negotiate well. There also are commercial data aggregators that specialize in it, that GPT can probably name for you. (I don't want to name names here.) At multiple employers, I have worked with this data from various vendors.
Which specific vendors?
Not sure if you can license it, but its possible to tap into HIEs for a lot of patient information. Or, if you have a deal with a PBM, you could literally see 100% of all prescriptions issues to americans using the PBM.
Again, i don't think you can license it, but its a data feed that is accesible incident-to providing other services.
You can build on top of that, of course, anyway you want.
I think way he meant a hashed chain: one where the history is tamper proof. The important part is that the data and logic used to process claim is digitally documented and sealed by hash. You get a copy of the hash in your claims. The hash chain is public or has to be given to an independent third-party. If you get into a kicking contest in court, the company they have to reproduce documentation with the hash. The hashing prevents forging the original documents in the process.
That's burning down your house to kill a spider. Even in a closed system infinite replay-ability is a big headache, and adding "blockchain" adds a hundred new problems. There's already legal system which is a direct dependency, and it is more efficient and manageable. (Yes, that's right, the US legal system actually looks sane by comparison.)
Instead, make a legal requirement that patients (and sometimes other stakeholders) can demand the data/logic behind the company decisions.
If you still want very tamper-proof write-only records, that can be done way more easily/quickly/cheaply with an old-school distributed database with fixed trusted nodes, run by multiple institutions that are not likely to conspire together.
Huh. This is already available, and it never works in the interest of the patient. Unless one has expensive attorneys, no individual has the time and patience to jump through all the hoops needed to get it to work. The point is to eliminate friction completely.
I do reiterate that scheduled data+logic exports from the government would alternatively also help, allowing the execution to similarly be replayed. A problem with a scheduled export, however, is that a corrupt state government will gladly change your records for you (in their favor) when you go to court. This is more difficult to do with a blockchain.
Ah yes, because blockchain is the 100% true source of ultimate truth.
Despite the little overlooked fact that data in it will be input by external systems and people.
If someone receives a letter in the mail with a claim rejection that contradicts what the blockchain says, that then is a very easy win in court.
If someone receives a letter in the mail with a claim rejection that never contradicts whatever blockchain says, they will not win in court.
Somehow you assume that data on blockchain was entered correctly and truthfully just because it's blockchain. Somehow you assume that no one will need expensive attorneys and expertise to sift through data just because it's on blockchain. Somehow you assume that there's some magic "execution" on blockchain that you can somehow easily "replay".
You obviously don't know much about how a blockchain works, haven't spent a minute thinking about the answers to your questions, and think no one else has either. Your concerns are unoriginal as far as blockchain technology is concerned, and solutions easily exist to each issue.
I know how blockchain works. For the purposes of this discussion it's an append-only distributed log.
However, blockchain proponents en masse have no idea how blockchain works or how real world works. That's why they always assign these magical properties to it: that all information added to blockchain is true and correct. That it's trivially easy for anyone to "replay" any number of any complex events containing any arbitrarily complex data to do something or reach some conclusion.
When challenged on this assumptions the answer is, inevitably, "you don't know how blockchains work" (everyone does) and "solutions to these challenges exist" (they don't).
Literally nothing in blockchain can prevent entry of bad/incorrect/falsified data. Literally nothing in blockchains makes it easy to navigate complex medical decisions without the help of experts (and in the US, lawyers) to untangle and understand the data and decisions.
I am sick and tired of the inept comment, but let's take your points, one at a time:
If the information on the blockchain contradicts a denial communication e/mailed to the patient, it will be an easy win in court. And if it's a simple data entry error, it will be fixed when reported.
Somehow you assume that no one will need expensive attorneys and expertise to sift through data just because it's on blockchain.
Yes, that's how it works, and there is no magic in it. The rules and claims and diagnosis codes both go on the blockchain. The client software executes the rules against the claims and diagnosis. Again, even a website can assist in it.
It is obvious that you're operating 100% in bad faith. Also, your experience of having to deal with experts and attorneys has ruined you from seeing beyond it.
And you will understand that how? As a person who is no an expert in medicine.
So you've got yourself hundreds of pages of medical data and decisions. Now what?
Ah yes. The magical rules that exists just because there's blockchain. And there's magical software that can easily execute those rules just because blockchain. Because as we all know, all medical data and decisions are input into systems in easily digestible machine-readable formats and all the machine-executable rules are there.
Funny how none of that exists now, but will somehow magically appear the moment you say "blockchain".
The only thing that's obvious is that the vast majority of blockchain proponents assume their opponents operates in bad faith the moment their opponents ask questions rooted in reality, and not in wishful thinking.
I've never dealt with experts or attorneys when it comes to medicine.
I've read enough of simple non-complicated descriptions of such simple things done to me like routine dental checkups and removal of a non-malignant tumor to see through any of the fairy tales you're trying to sell.
--- Edit ---
lol good luck with your "blockchain is the source of all truth and it's easy to run the rules on some client software"
I'm definitely not interested to continue this conversation, as it devolves into a well know pattern of blockchain-related delusions.
Adieu.
The problem is not people’s denials being lies, but that they actually were denied illegally.
We're now going in circles. This has already been covered. Jump to parent comment #2 in the hierarchy.
It shouldn't be auditable by anyone. There should be an audit trail though, and it should be available to the subject of that process on request.
That would be something, but the issue is that most people don't have the time or capacity to audit their own records, or to hire an attorney to escalate it. Journalists on the other hand specialize in this; they can audit everyone's records and expose wrongdoing at a state level.
A simple request for the audit record is absolutely something that consumers should be able to do. There's no guarantee that journalist is going to look at your record to get you help. It won't help in edge cases and those people will still be screwed.
The journalists look at aggregates first, and then individuals help tell the story. The point is that both individual-audit-records and full data+logic exports serve their unique purpose. Anyone should be able to use the data+logic to replay the execution, whether for oneself or for the entire community.
"Anyone should be able to use the data+logic to replay the execution, whether for oneself or for the entire community."
No. You can't guarantee anonymity. If you want to have someone audit them, use the GAO or similar.
Nnnnnnah, I don't want claims to be public. There's no real way to anonymize claims. e.g. someone getting specialized immune therapy in west virginia is pretty damn identifiable. Or someone being paid out in a claim of 300k+ for some highly specific antiviral.
I don't think you realize this already happens. It is already available to hundreds of organizations, both domestic and foreign. Any organization can license it really at a price. What I said would only democratize it, also mandating an appropriate level of anonymization which is currently inconsistent or missing. Also, think of the bigger picture, of the clues such data will yield for advances in healthcare.
Yes, despite the best anonymization, some can still be identified, but it will take significant effort, and be limited to a very small number of people, like the one in WV. Overall though, the ratio of benefits to harms from transparency would exceed 999:1.
Four hundred million dollars is unfathomable.
Has Deloitte ever built any software that is good? I certainly have a super strongly negative bias against their work. But hey maybe someone here has worked with them and was impressed…
Their skill is in winning huge government contracts, which is not easy.
I’d be comfortable betting my house that they’ve never produced even mediocre software. Why would they if the government is willing to pay for garbage-tier work?
Deloitte has really once built software that good, it is a AI / strategy / tactic type multitool AI used for the purpose of winning government contracts
One thing to remember is that governments often cannot hire qualified people to work on these projects, which means it’s less “willing to pay” than “forced to accept the only option”. If they aren’t allow to pay market rates for tech workers, they won’t have the skills to even properly evaluate proposals or validate the work being done until it’s too late – and by that point if there’s a dispute, the contract business analysts and project managers will likely be able to point to some documents they wrote as proof that “the government” required whatever problematic decision was made even when that was some non-technical civil servant picking an option they suggested without fully understanding the implications.
The single best way to save government money on infrastructure projects (software and real) would be to hire a bunch of engineers at competitive salaries so there’d be in-house expertise without conflicts of interest, but since that involves spending money up front and trusting people to be professional it’s politically unlikely.
Not in my experience.
The contract is likely structured into "Scope of Work" and "Ongoing Maintenance and Support" to help justify this cost.
Maybe it should be open source. It is using our tax dollars after all. But I think this failure isn't a failure of the software. But a failure of using software. And of have complex laws/criteria of who can be helped. We should craft laws and programs that are uncomplex. 400 million dollars on admin software to ultimately deny people care they want. That just shouldn't be a thing. We should have spent that money on helping people, and using it to 'eat' the cost of accepting too many people.
Our justice system acknowledges that it's flawed and it's flawed with the idea of letting guilty people go, in order to make sure we aren't charging innocent people.(granted we are failing at that). But we should be crafting care with the intention of accidentally helping people who may have no qualified so that all qualified people would get care.
I'll do you one better:
We should just have a publicly-funded health insurance plan that applies to every American at a basic level. Then you don't have to have a massive bureaucracy to figure out who's eligible, who's not, how long they are eligible, etc.
We've successfully spent more money trying to deny people public benefits than we probably would have just providing a basic level of public benefits to everyone.
I cannot fathom that it's nothing more than a strange coincidence that we have spent more money making sure as few people access any benefits as possible than it would cost to simply provide things, and that those circumstances directly benefit some of the largest corporate donors in the USA. Like, every business that has employees on welfare is receiving a subsidy. The fact that Walmart and other large employers (I think maybe Amazon got caught out doing this?) pass out literature on how to apply for welfare tells you everything you need to know. If those people received a basic income, public insurance, etc. etc. that would provide a baseline, okay existence, with the option to then get a job to buy luxuries and such, not a fucking soul would work for Walmart. Because why the fuck would you have a job that doesn't pay you enough to have a good life unless the alternative is starvation?
Think of every single employer in this country that employs people who, despite working full time, still qualify for welfare. All of those companies have a direct financial incentive to pour shit tons of cash into ensuring our social safety net is as shitty as possible.
Apparently, that subsidy can happen whether or not you are even offered a job. This was found on a recent job application:
"We are asking you for the following information to determine if we, your potential employer, could be entitled to tax credit benefits. These tax credits were created to help people that have historically faced barriers to employment. We may be able to obtain valuable tax credits based on your answers to the upcoming questions."
I would think the wording is just not very well chosen, and the tax credits will only be unlocked when the potential employee becomes an actual employee.
The United Stated Digital Service is pushing for more government software to be open source[1]. I have no idea how effective it is, but it made me happy to see
[1] https://playbook.usds.gov/ ctrl+f "Default to open"
It's extremely effective. Not just USDS either, but also 18F (now GSA TTS). Also, much of the UK government.
The people win when the sun can shine.
Not just the USDS (as the USDS is a small part of a larger effort), the GSA as a whole is pushing for this. They maintain a lot of open source software for the federal and state governments and they try to do open by default and FOSS COTS where they can.
Just the main GSA github org has over 1000 repos in it.
https://github.com/GSA/
https://open.gsa.gov/
There is no competent government contractor. The only companies which survive RFP operate in a way to maximize cost and minimize value.
There is a subset pushing the change that. Typically people connected in some way to USDS or GSA TTS who then go into private business. It shows up in surprising places.
I agree with this sentiment, but what is the relationship between the linked French Declaration and American law? Why not try to build the argument based on FOIA: https://en.wikipedia.org/wiki/Freedom_of_Information_Act_(Un...