Get Your Health Data!

Posted April, 7 2017 by Amanda Dunker


HIPAA is not why you can’t see your own health records…. 

It’s a good idea to get copies of your medical records, for a lot of reasons – maybe you moved and are starting over with a new doctor, or maybe you have a big decision to make and want to get a second opinion. So why is it so hard to get them? How can people feel empowered or take personal responsibility for their health if their own health data is locked away somewhere?

The National Partnership for Women & Families is working on this problem with their GetMyHealthData campaign. The campaign, funded by the New York State Health Foundation, is teaching people about their rights, working on tools that will make it easier for provider and patients to share information online, and moving us all toward a future where getting your health information is a simple and normal part of getting medical care.

The US Department of Health & Human Services has regulations about what providers must provide to their patients. That data includes information that the provider uses to make decisions about your care. The only exceptions are a mental health care provider’s personal notes from counseling sessions and information that is prepared for civil, criminal, or administrative court proceedings. But even with regulations, patients are not always comfortable asking for their information and providers are not always sure how to provide it in a way that is useful for patients and in keeping with other regulations about patient privacy.   Data Story Gathering

You can help! First, get your own health data. The campaign’s website includes guides for requesting your health information. They even created a troubleshooting guide if your request does not get you the information you wanted. The more people ask for their data, the closer we’ll be to making the process easier for everyone.

Second, tell the campaign how it went! Sharing your story will help the campaign learn about the barriers people experience and help other people feel more comfortable asking for their own information.  Both good and bad stories are welcome and helpful – the important thing is to have the discussion!