e-Patient Dave

Power to the Patient!

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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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Thanks for eight great years, Kristin

Anyone who’s worked with me in the past eight years has gotten to know Kristin Gallant, the terrific assistant who’s helped with all my administrative and customer service work since 2013. With a workload that’s ranged as high as seventeen speaking events in a month, she’s been rock solid, indispensable.

Our working relationship has also been a perfect example of flexible hours, virtual office, apps, and “cloud everything,” enabling each of us to stay on top of things regardless of which time zone I was in. A professional executive assistant and bookkeeper before we met, she adapted hours as her growing kids’ school hours changed, often screen-sharing as we juggled tasks, client communication, and administrative housekeeping. And as a “cancer kicker” herself, she’s understood exactly what this work is about.

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For all who hate computers in medicine: here’s what we got before.

Visit notes from my ENT appointment, Sept 15, 2009

The photo above shows what “visit notes” from a doctor appointment might look like in the era before computers. Just two days before my first speech where I said “Gimme my damn data,” I had an ENT visit, and on the way out I asked for a copy of the doctor’s notes. The clerk snickered out loud and showed it to me, saying, “If you really want it….”

No joke; this is what the doctor had recorded.

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Principle 14: It’s your data. Get it.

You can’t possibly achieve to your potential if you lack relevant information. In the US you’re legally entitled to all your health data.

Final entry in the series of fourteen foundation truths about Superpatients.

Good health systems will gladly give you whatever information you need to help understand your case. If that’s the case for you, great!

Watch 30 seconds of this – the link starts at 8:47 into the talk. Email subscribers, if you can’t see it, click here.

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Principle 13: Some useful information will NEVER make it into journals.

In 2007 my survival from a near-fatal cancer was aided by information from my patient peers – information that will never warrant getting into a peer reviewed journal. But it was real.

Next in the series of fourteen foundation truths about Superpatients.

Many of the posts in this series have been about the nature of science, both its intellectual basis and the practical realities of how it’s practiced. When you’re at the fringe of medical knowledge, by definition you are messing around in a region where things are not mainstream, and you are hoping to find something that works – something unknown or not well-known. So it’s useful to understand the nature of reality, the nature of science, the nature of medical literature, and how knowledge flows (or doesn’t flow) to the point of need. Here’s a recap of those posts:

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Principle 12: Not all truth has been discovered yet.

Some people act like if there’s no evidence for something, there never will be, so there’s no hope. Nothing could be more unscientific. This is legitimate reason to take action.

Next in the series of fourteen foundation truths about Superpatients.

As medical science progressed from the 1800s to 1900s and beyond, there’s been a long trajectory of teaching young doctors to stick to science, not speculation. I’ve often heard of young doctors in training being scolded with “There’s no evidence for that!”

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