We can talk about 'shoulds' and 'translucency' all we like, in the end the insurance business will find a way to use such a database punitively.
The real question is how to arrive at a health-care system that doesn't punish the sick. The answer is technically simple but politically difficult. It starts with acknowledging that health care isn't a market. More accurately, it is a market, but the good being traded is healthy individuals, not health care itself. Senator Edward's health-care proposal (or Sen. Clinton's, as it's much the same thing) is a good first step. Once we have a system where we need not fear the database, we can proceed to establish evidence-based medicine.
Until that time, I fervently oppose all attempts to establish a database of medical records. The incentives in our current system are so perverse, that the database will be very dangerous to our health.
A secondary issue is one of simple data gathering. According to the optimistic hurrahs of Microsoft,
"People want to be able to collect, and securely store, and share their private health care information which is today scattered all over the place, with doctor A and doctor B and hospital C, and wherever they were born."
Lovely. How do they propose to extract that information from doctors and hospitals ? For them, that data is part of their competitive advantage. Whenever I get tests or procedures done (and I've had a lot recently) the results are kept secret from me: sent only to my doctor and doubtless a variety of financially interested parties, insurance companies, and so on. On a few occasions kindly nurses or technicians have actually shared the information with me, but that's the exception. For the most part an inquiry as to obtaining the technical details is treated with a kind of amazed wondering contempt by the administrative staff.
Update 2011:
Via the New York Review of Books I see:
"this past April, the Supreme Court heard arguments in Sorrell v. IMS Health, in which IMS Health, in challenging Vermont’s statutory restriction on the sale of patients’ prescription information to data-mining companies, argued that harvesting and selling medical records data is a First Amendment right. "
I don't have much confidence this Court will decide for the patient: then our data will belong to everyone but us ourselves.
Update 2017: the Supreme Court decided that the companies' right to sell your data is more important than the individuals' right to privacy. As expected.
Another notable database effort is the Personal Genome Project. In the different world where this information wouldn't be used by insurance companies to deny care, I'd enthusiastically volunteer. Well, maybe not, given the involvement of the egregious Ms. Dyson.
Update October 2007: turns out these databases aren't subject to the HIPAA privacy regulations. Microsoft's response ? "Trust us". Well, no, I believe I won't.
Update March 2008: ars technica has a decent overview of the situation. The takeaway: "many of the reasons for poor US health outcomes have much deeper structural roots related to a lack of preventative care versus emergency care, issues that are tied in to the lack of a universal healthcare system and the nature of insurance companies, that are outside the scope of medical records databases".
Update March 2010: The announcement of $20 billion in the stimulus bill for electronic health records (EHR) has started a gold rush. There's excellent coverage of the IT issues by Andy Oram on the O'Reilly Radar weblog. It elides the political question unfortunately - with single-payer many of the complexities of the IT implementations simply disappear. The problem of interoperability of competing systems vanishes, for one.
An IEEE Spectrum article covers some of the security implications. In particular my paranoia above is confirmed by Dr. Deborah Peel, who writes
"Today our [the patient's] lab test results are disclosed to insurance companies before we even know the results. Prescriptions are data-mined by pharmacies, pharmaceutical technology vendors, hospitals and are sold to insurers, drug companies, employers and others willing to pay for the information."
EHR will only expedite this process. I'd like to see a blunt rule in the HIT regulations that gives ownership of the medical record to the patient and his heirs and assigns. Currently the ownership is vested somewhere in the aether.
Update July 2010:
the HIT has released its "meaningful use" criteria for the adoption of EHR by doctors, etc. This offers a few thousand dollars (from the stimulus package) for implementation of an EHR. As Andy Oram observes,
"The catch is that they can't just install the electronic system, but have to demonstrate that they're using it in ways that will improve patient care, reduce costs, allow different providers to securely share data, and provide data to government researchers in order to find better ways to care for patients. That's what "meaningful use" means."
An IEEE Spectrum article covers some of the security implications. In particular my paranoia above is confirmed by Dr. Deborah Peel, who writes
"Today our [the patient's] lab test results are disclosed to insurance companies before we even know the results. Prescriptions are data-mined by pharmacies, pharmaceutical technology vendors, hospitals and are sold to insurers, drug companies, employers and others willing to pay for the information."
EHR will only expedite this process. I'd like to see a blunt rule in the HIT regulations that gives ownership of the medical record to the patient and his heirs and assigns. Currently the ownership is vested somewhere in the aether.
Update July 2010:
the HIT has released its "meaningful use" criteria for the adoption of EHR by doctors, etc. This offers a few thousand dollars (from the stimulus package) for implementation of an EHR. As Andy Oram observes,
"The catch is that they can't just install the electronic system, but have to demonstrate that they're using it in ways that will improve patient care, reduce costs, allow different providers to securely share data, and provide data to government researchers in order to find better ways to care for patients. That's what "meaningful use" means."
A few thousand isn't going to do it. The costs of EHR fall upon the doctor, the benefits accrue to society and the patient. The costs are much higher than a couple of thousand, especially considering the current wholly dysfunctional state of EHR. Many EHRs have no API at all, others have incompatible ones, and so depressingly on. Single-payer with a single EHR solves all these problems at once, but because it's politically impossible, we're left with hideous technical problems.
I am however happy to see that HIT has included the requirement that the EHR be available to the patient.
EHR update 2021, in conversation with an implementer:
I am however happy to see that HIT has included the requirement that the EHR be available to the patient.
EHR update 2021, in conversation with an implementer:
Connecting Epic instances across hospital systems is relatively involved
I said,
This is the same software, running in different places, and it can't
manage the most basic of EHR requirements, interoperability. The whole point of EHRs was to be able to interchange health records between different software systems and healthcare systems.
The state of healthcare in the USA is always worse than can be believed..
He responded,
I had a conversation this morning about the best way to exchange a certain class of data, which there was a "standard" established over a decade around said exchange. Our conclusion was that flat files (basically giant CSV files) were likely to continue to be the best option here as every example we found/knew of was either flat files or places that had attempted to implement the standard and then went back to flat files. Maybe next decade the standard will be sufficiently ironed out...
Back to the original 2007 post..
Side rant on a related note, the faery realm of consumer-directed health care: how is it that society spends six to ten years training doctors to provide health care, then rewards them handsomely for their expertise: yet, once the market fairy appears, consumers (who may not have completed high school) are supposed to be able to 'direct' their own health care ?
For what value of 'direct' can this policy actually work ?
Airily assuming that the policy works, the next question arises - What is the market failure that makes doctors so expensive, when untrained consumers are able to effectively make the same decisions and determinations as said doctors, about their health care ?
For what value of 'direct' can this policy actually work ?
Airily assuming that the policy works, the next question arises - What is the market failure that makes doctors so expensive, when untrained consumers are able to effectively make the same decisions and determinations as said doctors, about their health care ?
Shadowfax makes this point much better than I, patients are not and cannot be consumers. From there, "HALF of all health care costs in the US is concentrated in only 5% of the population". It really doesn't matter how scrupulously the other 95% shop for cheaper bypasses, chemo medications, etc.
Update 2015: Apple now plunges enthusiastically into the swamps, with the HealthKit app(endage) to the Apple Watch, which itself requires an Apple Phone. I do not expect it to end any differently from the Microsoft, Google or Samsung projects. The IEEE provides a thoughtful analysis again.
Update 2016: John Quiggin in the Guardian, on market failures:
"Many of the same issues arise in healthcare. Obviously, if we knew what was wrong with our health and how to fix it, we wouldn’t need doctors to tell us. As it is, we need to rely on the judgment of our doctors to give us the right treatment and, equally importantly, to tell us when we will get better without treatment. The greater the role of profit in the system, the greater the incentive to provide unnecessary or overpriced services. The example of the United States, which spends more on healthcare than any other country, with worse results, is an illustration."
Update 2017: the market in healthcare turns out to be your data.
“Data scientists can now circumvent Hipaa’s privacy protections by making very sophisticated guesses, marrying anonymized patient dossiers with named consumer profiles available elsewhere – with a surprising degree of accuracy”.
Also in 2017, the state of EHR - still wholly dysfunctional, as predicted.
"43 percent reported that outside patient information was available electronically when necessary, but more than one-third reported that they rarely or never used it. The most common barrier these hospitals reported to using outside information was that their clinicians could not see it embedded into their own system's electronic health record."
Update 2019: Facebook isn't making enough money, so they are also making a health-care play. As @emilymullin notes, of course none of this data is protected by HIPAA either. Facebook says, "trust us" but I think I do not.
Update January 2020: Google now has all your health care data, to do with as it will. So it goes.
" In just a few years, the company has achieved the ability to view or analyze tens of millions of patient health records in at least three-quarters of U.S. states, according to a Wall Street Journal analysis of contractual agreements.
In certain instances, the deals allow Google to access personally identifiable health information without the knowledge of patients or doctors. The company can review complete health records, including names, dates of birth, medications and other ailments, according to people familiar with the deals."
From that same WSJ article, this part is hilarious:
"Cerner ultimately accepted a less generous offer from Amazon, in part because the company decided Amazon was more trustworthy on security."
Jeff Bezos, who started Amazon as relentless.com, which he still owns and redirects to Amazon; the company that does this, and this, as we live in serfdom. Trustworthy ?
Also this month, via @WolfieChristl,
Experian announced that 'every person in the U.S. population, of an estimated 328 million Americans, have been assigned a unique Universal Patient Identifier'.
The ID is 'not intended' to be 'patient-facing' and is 'not known to the patient'.
'Each individual in the U.S. that has received medical care or utilized a pharmacy has been processed through the solution and assigned a UPI.'
A universal ID that is opaque to the individual, what could go wrong.
This solution comes to you from Experian, with its unparalleled expertise in losing sensitive data and walking away scatheless.
The patient behind the UPI of course might take some harm, but it's unlikely to harm Experian's profit margin, so that's all right then.
Update 2015: Apple now plunges enthusiastically into the swamps, with the HealthKit app(endage) to the Apple Watch, which itself requires an Apple Phone. I do not expect it to end any differently from the Microsoft, Google or Samsung projects. The IEEE provides a thoughtful analysis again.
Update 2016: John Quiggin in the Guardian, on market failures:
"Many of the same issues arise in healthcare. Obviously, if we knew what was wrong with our health and how to fix it, we wouldn’t need doctors to tell us. As it is, we need to rely on the judgment of our doctors to give us the right treatment and, equally importantly, to tell us when we will get better without treatment. The greater the role of profit in the system, the greater the incentive to provide unnecessary or overpriced services. The example of the United States, which spends more on healthcare than any other country, with worse results, is an illustration."
Update 2017: the market in healthcare turns out to be your data.
“Data scientists can now circumvent Hipaa’s privacy protections by making very sophisticated guesses, marrying anonymized patient dossiers with named consumer profiles available elsewhere – with a surprising degree of accuracy”.
Also in 2017, the state of EHR - still wholly dysfunctional, as predicted.
"43 percent reported that outside patient information was available electronically when necessary, but more than one-third reported that they rarely or never used it. The most common barrier these hospitals reported to using outside information was that their clinicians could not see it embedded into their own system's electronic health record."
Update 2019: Facebook isn't making enough money, so they are also making a health-care play. As @emilymullin notes, of course none of this data is protected by HIPAA either. Facebook says, "trust us" but I think I do not.
Update January 2020: Google now has all your health care data, to do with as it will. So it goes.
" In just a few years, the company has achieved the ability to view or analyze tens of millions of patient health records in at least three-quarters of U.S. states, according to a Wall Street Journal analysis of contractual agreements.
In certain instances, the deals allow Google to access personally identifiable health information without the knowledge of patients or doctors. The company can review complete health records, including names, dates of birth, medications and other ailments, according to people familiar with the deals."
From that same WSJ article, this part is hilarious:
"Cerner ultimately accepted a less generous offer from Amazon, in part because the company decided Amazon was more trustworthy on security."
Jeff Bezos, who started Amazon as relentless.com, which he still owns and redirects to Amazon; the company that does this, and this, as we live in serfdom. Trustworthy ?
Also this month, via @WolfieChristl,
Experian announced that 'every person in the U.S. population, of an estimated 328 million Americans, have been assigned a unique Universal Patient Identifier'.
The ID is 'not intended' to be 'patient-facing' and is 'not known to the patient'.
'Each individual in the U.S. that has received medical care or utilized a pharmacy has been processed through the solution and assigned a UPI.'
A universal ID that is opaque to the individual, what could go wrong.
This solution comes to you from Experian, with its unparalleled expertise in losing sensitive data and walking away scatheless.
The patient behind the UPI of course might take some harm, but it's unlikely to harm Experian's profit margin, so that's all right then.
Update 2021: A huge well-funded initiative to 'disrupt health care' run by the smartest guys in the room, just collapsed as we all expected. Helaine Olen has the rundown in the Washington Post.
The reason our health-care system fails to work for so many is the same reason people were convinced three CEOs could solve the problem: our nation’s worship of the free market and business success. Instead of taking such common-sense steps as permitting the government to regulate the cost of pharmaceuticals or hospital charges for services, we leave it to a pastiche of insurance companies, hospitals, pharmacy benefit managers, corporations, private equity — you name it. The result is that no one is responsible, costs run rampant and the patient all too often gets stuck holding the bag.
...
Bezos, Buffett and Dimon could not successfully take on the U.S. medical system, because when it comes to health care, there is no substitute for systemic government action and overall reform.
Those magical disruption market beans just aren't giving ROI anymore.
Update 2024: now with AI !
Today Sam Altman and I published a piece in TIME sharing our vision for how AI-driven personalized behavior change can transform healthcare and announcing the launch of Thrive AI Health, a new company funded by the OpenAI Startup Fund and Thrive Global, which will be devoted to building an AI health coach. The company’s mission is to use AI to democratize access to expert-level health coaching to improve health outcomes and address growing health inequities.
This is the Sam Altman that said,
“I probably trust the answers that come out of ChatGPT the least of anybody on Earth,” Altman told the crowd at Bagler’s university, to laughter.He doesn't trust his product, but I guess it's good enough for the rest of us in the Altman calculus.
"Compel the poor to live upon a crust of bread, by soft mild arts
when a man looks pale
With labour and abstinence, say he looks healthy and happy"
The fine print shows this coach will give you helpful advice like, sleep more, eat better, exercise more. These are choices that are available only to the wealthy like Sam Altman and Arianna Huffington, and to the upper middle class which has stable employment, predictable work hours, and health care. For the other 80% of the world this coach does nothing. Not to mention that it does absolutely nothing to address inequities. Who is buying this nonsense ?
"Wisdom is sold in the desolate market where none come to buy"
