MASSDEVICE ON CALL — A growing group of patients is demanding access to personal digital medical information, including health records and data collected from electronic medical devices.
The movement culminated in a home-made music video, published this week by the so-called "American College of Medical Informatimusicology," in which ACMI group members demand their "DaM" data, or "data about me."
It’s not the 1st public outcry against barriers that prevent patients from accessing their own medical information, but it may be one of the most engaging.
"You can send me your bill, charge me anything, drive a nice car, live like a king. With all the dough that I pay, tell me why is it so hard to get my data right away?" the group sings.
"Gimme my DaM data, it’s all about me so it’s mine," the chorus refrains.
The movement isn’t just about access for the sake of access. Some patients believe they can use the data to better monitor their own diseases or make better decisions about their lifestyles.
Some patients, like open-source technology advocate Karen Sandler, which MassDevice.com profiled last year, believe medical devices could be made safer and more reliable if device makers let patients and other interested parties take a look inside the software black box.
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