e-Patient Dave

Power to the Patient!

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Is Beth Israel lying, denying, or complying?

I am really irritated. My hospital has told me they’re not supporting the federally required FHIR standard to let me access my health data. Is this legal??

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Important update: a robust Twitter thread is drawing lots of answers on whether this is legal. Some of it is “gray area” but among other things:

  • At present, even if their behavior is a violation, there’s no penalty!
  • But by end of 2023, if they don’t have this, they might not get any more payments from Medicare(!)
  • There are three separate requirements.
    • System vendors are required (today) to offer this feature to their buyers (hospitals).
    • Care providers (hospitals etc) aren’t required to buy them and offer them to patients (yet)
    • But by end of 2023, providers will have to offer this to patients, if they want to get paid by CMS (Medicare)

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Resuming the original post:

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Ethics and barriers: BMJ webinars on patient access to medical records

The BMJ (formerly the British Medical Journal) continues to lead the world in patient & public partnership with clinicians, including more coverage of patient empowerment topics than anyone else I know in medical publishing. Some of the issues are unique to Britain but many are global cultural issues – not least being the balance of power between clinicians and the patients they serve.

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New podcasts & webinars #1: “Interoperability & Equity” for HIMSS

There’s been an interesting surge in evangelist activity recently: I’ve been involved in several podcasts and webinars, all giving new life to the “gimme my data” movement. Here’s one that went live today on the HIMSS Learning Network. (It’s free but you may need to register.)

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“HIPAA: You aren’t a Covered Entity if you don’t bill electronically”

[Readers who are familiar with HIPAA can skip to the tweets below.]

Recently there’s been a lot of discussion about how the 1996 HIPAA law, whose regulations govern health data privacy (and access), is not sufficient for today’s world of apps and digital everything. For instance, the regs say docs & hospitals generally have to be careful with your medical records – but apps and wearables like Fitbits didn’t exist at the time, so HIPAA says nothing about what apps learn about you, nor what such companies do with it. Same for sites like Facebook and Amazon’s ever-listening Alexa. So everyone in the field agrees HIPAA needs to be replaced.

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Opioids 2: the supply side of the problem – like lethal brush fires

Source: WIkipedia ("Harris Fire"
Source: Wikipedia (“Harris Fire”) outside San Diego, 2007

Last minute update:
Yesterday, as I was drafting this, federal officials arrested six former employees of a drug company for flat-out bribing some doctors to overprescribe fentanyl, which is 40-50x stronger than heroin, the cause of many opioid deaths.

As I’ve said in other posts, this is a complicated subject so don’t jump to conclusions until you’ve read it.

Yesterday, in Opioids. Alarm, and I mean YOU, I posted about how dreadful and drastic the opioids problem has gotten, citing (as just one example) a small high school in Maine where five percent of kids have been dying in every class. Think of how many were in your graduating class, and imagine 1/20th of them dying before graduation.

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