Power to the Patient!
One of the most important culture changes in healthcare this century has been the advent of patients’ access to their physicians’ notes. Called OpenNotes, this project was started at my hospital (Boston’s Beth Israel Deaconess Medical Center) by the extraordinary team of Tom Delbanco MD and Jan Walker RN, MBA. I was lucky enough to be a participant in the first OpenNotes clinical trial in 2010, and enthusiastic enough to blog the daylights out of it since the beginning.
[Read more…][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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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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This is something I rarely do: I’m reposting, verbatim, a previous post, because its relevance has accelerated. Please give it another read.
In June I wrote here about the ten part blog series I recently did on Tincture, about why I believe the HL7 FHIR standard promises to be so important in achieving the long-felt need for patients to have access to every bit of their health data … to “let patients help” improve care, as my book and TED Talk have said for YEARS. But last fall I gave a talk that expressed my impatience. The title:
Perhaps others would find it useful… either your exact tool or your general method! In any case, share it with us, and maybe you’ll get brought to Amsterdam for …
