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US Federal law now requires distribution of complete healthcare records to patients in digital formats

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  1. patience_limited
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    The article goes on to make the points that medical records were already supposed to be accessible to patients under HIPAA (the U.S. law which also covers medical records privacy), and suggests...

    The new federal rules — passed under the 21st Century Cures Act — are designed to shift the balance of power to ensure that patients can not only get their data, but also choose who else to share it with. It is the jumping-off point for a patient-mediated data economy that lets consumers in health care benefit from the fluidity they’ve had for decades in banking: they can move their information easily and electronically, and link their accounts to new services and software applications.

    “To think that we actually have greater transparency about our personal finances than about our own health is quite an indictment,” said Isaac Kohane, a professor of biomedical informatics at Harvard Medical School. “This will go some distance toward reversing that.”

    The article goes on to make the points that medical records were already supposed to be accessible to patients under HIPAA (the U.S. law which also covers medical records privacy), and suggests the release in standard, interoperable digital formats won't be an overnight change.

    On a personal level, I've already had the peculiar experience of seeing a diagnosis recorded that's different, and more serious, than what the clinician told me it was.

    I suspect there will be a new groundswell of patients inquiring about whether they're correctly diagnosed, whether their physicians are upcoding diagnoses for reimbursement or understating severity, etc. There's also the possibility of a secondary market where patients sell their own data, especially for rare and interesting genetic diseases.

    But it's also going to mean an end to the days when physicians were candid about their biases in patient records. No more "FLK" (shorthand for "funny-looking kid", usually for miscellaneous genetic or gender issues) and other coded judgments that have historically populated medical records jargon.

    And interoperability... Just because records are available in PDF doesn't mean they can be directly imported and searchably accessed in any of the plethora of records systems that have developed in the U.S. Interesting times.

    3 votes