Friday, October 5, 2007

healthcare nonsense

I see via the reliably interesting Jon Udell that yet another 'health-care database' is being trumpeted abroad in the land. Apparently neither Google nor Microsoft has noticed (or perhaps they prefer not to acknowledge) that the technical problem has been comprehensively solved already, by the Veterans Affairs medical system. The remaining problems are not technical but political. As Jim Gray benevolently wished for us, "may all your problems be technical". The world is full of smart people who can solve technical problems: all the smart in the world can't solve politics.

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."

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.

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 ?
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,”

1 comment:

Dr. J said...


Heady stuff...for a non-health care provider. Great stuff.