25 Oct 2015

Better Health Records

I have many envelopes full of bills, test reports, prescriptions X-ray and ultrasound films, and so on for myself. And more for my mom. And more for bills.

This a pain to keep track of, and I’m guaranteed to lose some of these over the years. Even if I have a particular report, I may not have it with me when the doctor asks me for it, in which case it hasn’t served its purpose.

Or if he asks me, “When did you last get your uric acid level checked? What was it?” I may not be able to answer him immediately. Each report may have dozens of individual measurements, so it’s hard to know which test included uric acid.

To fix this, test reports should all be delivered digitally. By which I don’t mean scanned PDFs. I mean structured data that can be queried in many ways: what was my last measured uric acid level? The maximum [1]? The minimum? The average?

As another example, I should be able to get a warning if my weight has increased beyond its five-year max. Or I should be able to set a limit and get warned if it crosses that limit.

So, test reports, prescriptions, etc, should all be delivered as structured data. You’d create an account with a cloud service, and the hospital would deliver all your reports and data there, instead of printing it out on paper and giving it to you [2]. Instead, you’ll sign up for a health app that stores its data on the cloud, and the hospital would upload the results there. And any doctor you’re consulting would automatically get access to all your data, so she can directly check your uric acid level instead of asking you and not getting the answer.

No matter which hospital or diagnostic center you go to, all your test reports would get uploaded to the service of your choice. And X-ray or ultrasound films would be scanned at a high enough resolution that nobody needs to refer to the original [3], and the scans uploaded. And no matter which doctor you go to, he’ll be able to pull in all this data, no matter whether the tests were done in the same hospital or not.

Needless to say, this will all work only if there’s a standard, open format for storing data. And all participants in this ecosystem should be under strict legal requirements for privacy [4] and data portability. For example, cloud services should let you export all your data, free, without any loss of information.

Once in the cloud, your data will almost never be lost. And all of it will be available when it’s needed. And you’ll be able to find the single piece of information you want amongst the thousands of records, because it will be structured.

That way, people will be able to use the cloud service of their choice, one that trust. And if someone doesn’t trust the cloud at all, they should still be able to use a local app to store the data. They should be able to get the test reports and other data from the hospital over email or on a USB drive, and import it into their health app [5].

None of these are new ideas. Personal health records services like Microsoft HealthVault or Google Health have been built. Unfortunately, these are not widely used, and not even available globally. HealthVault, for example, seems to be available only in the US and UK. Such systems need to be deployed globally, standardised, and all hospitals, diagnostic centers, doctors and so on should participate, for them to really work, all backed by strong legal privacy and confidentiality protections.

[1] Say over the past five years.

[2] Needless to say, if the hospital were to just email an XML file to you, or give it to you on a USB drive, all these files would lie scattered around in attachments or on multiple drives, and you couldn’t query this scattered data later. So the purpose wouldn’t be achieved. All the data needs to be imported into a single app where it can be indexed and queried.

[3] Which would also be given to you, of course.

[4] Needless to say, my doctor shouldn’t be able to sell my medical records. Unless in an aggregated and anonymised form like the doctor telling a pharmaceutical company, “25% of my patients are obese.”

[5] If you’re building a social network or notes app, you can take a more opinionated approach and expect users who don’t like your approach to find another app. But health is a universal need — practically everyone has gone to the doctor at some point. If 20% of people don’t trust the cloud, for example, that’s more than a billion people. You can’t throw them under the bus. So, any digital health records system should handle a diversity of user needs and preferences. An individual app needn’t handle all reasonable needs, but the system as a whole needs to.

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