In 1996, Congress enacted HIPAA (the Health Insurance Portability and Accountability Act), which was designed, in part, to give patients the right to access their own medical records. Twenty years later, much has improved, but patients still have trouble prying their personal information out of hospitals and health care systems.
“It continues to be quite difficult for patients to navigate the records request process, and particularly, to obtain digital copies of their health information,” says Erin Mackay, coordinator of Get My Health Data, an initiative based in Washington, DC that advocates for patient access to digital health records. “I think there’s a lack of understanding of the rights patients have to this information and providers’ responsibilities to make it available.”
Big tech companies like Apple and Google are working to make access easier for patients, as are a number of small startups, says Christina Farr, senior writer at Fast Company in San Francisco.
“Apple, which yo