Health IT, Patient Engagement

‘E-Patient’ Dave: Time to open the medical records spigot

We have the latest slogan for the patient empowerment/data liberación movement: the medical record "spigot." This comes courtesy of "E-Patient" Dave deBronkart.

We have the latest slogan for the patient empowerment/data liberación movement: the medical record “spigot.”

This comes courtesy of “E-Patient” Dave deBronkart, who posted Monday on the Get My Health Data campaign’s blog.

In encouraging empowered patients — and their friends and neighbors — to request copies of their health records, cancer survivor deBronkart wrote (emphasis in original):

In fact what we should ask for is not just CDs or printouts now and then – we should demand a medical record spigot that sends us a continuous flow of information, just like banks and credit cards do. You don’t have to read everything they send; you just need to have it, so you can review it when you need to, and so you can do with it what you want.

Why should it be hard work to get your sick mother’s records?? Your sick child’s?? Your own?  Every individual has a right to health, and that includes a right to what my musician friend Ross Martin M.D. calls “their DaM data” – their “Data About Me.”

Indeed, deBronkart has been saying, “Gimme my damn data,” pretty much since his cancer diagnosis in 2007. Martin softened the “damn” part with an acronym, and a song, which deBronkart shared in his blog post. (DeBronkart had a prominent role in the video.)

How can activist patients help create a spigot? “It will be harder in healthcare because medicine’s complicated. But you know Silicon Valley – they’d be happy to invent new software to sell us, but they can’t because the data’s locked up. Demand a spigot!” deBronkart said.

Sign up now for whatever patient portals are available, he said. Ask for copies of as much data is available right now. And, deBronkart advised, “Tell your care providers, ‘I really want to start getting involved in managing my records. Please get software that will let me do this.’ They can’t buy that software yet, but all change starts with people asking.”

It may seem like a Sisyphean task to expect providers to ask their EHR vendors to liberate data, but at some point, consumer demand will win out, at least in theory, right?

Photo: Flickr user Paul Keller 

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