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HIPAA: The Key To Consumer Access

HIPAA: The Key to Consumer Access

HIPAA, the Health Insurance Portability and Accountability Act, is a ubiquitous but poorly understood companion to everyone entering a U.S. health care setting. A wide-reaching law, HIPAA has been in place for more than 20 years and governs patient privacy and the security of personal health information.

Too often, HIPAA is used unfairly as an excuse to block patients and caregivers from getting access to their medical records or other health information.

In reality, HIPAA is not intended to be a lock to keep people out of their medical records. Rather, it can and should function as the key to helping people access the information they need to manage their health or care for a loved one. Specifically, the HIPAA Individual Right of Access is all about connecting patients with their health information – electronically whenever possible.

Unfortunately, we’ve heard stories from individuals all over the country, and most recently from advocates in New York, that make clear HIPAA isn’t working like it should. Too many patients and caregivers still face barriers when requesting health information. For example, the daughter who is unable to get information about her mother’s hospitalization or the patient who cannot get a copy of her own test results.

This past spring, a dozen consumers, patients and advocates participated in a discussion about how to improve information sharing in New York. The group identified the need for an educational resource for patients, families and staff at community help hotlines. They suggested a Frequently Asked Questions (FAQ) resource with a glossary of terms to help consumers “talk like a pro” when trying to get or share health information.

After a few months of development and ongoing feedback from the group, we are excited to share the resulting product, available in English and Spanish!

We hope you will find this resource helpful in empowering people to get the information they need when they need it. Please feel free to distribute to your networks. We welcome your feedback on this resource, and as always, your stories about getting or using health information.


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