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We continue our Tracer Series this week by sharing common roadblocks Tracers have faced when they tried to get and use their health data. Luckily, the U.S. Department of Health and Human Services (HHS) recently released guidance for health care providers that clarifies patients’ rights to their electronic health data. The following insider tips and resources can help you navigate four common obstacles and successfully get (and use) your digital health data!  

Roadblock: You’re told you can’t get your health data because of HIPAA (the Health Insurance Portability and Accountability Act).

“Medical providers treat my data as if it were top secret. I understand their concern about revealing my data to third parties, but many are reluctant to reveal it to me… How can I make informed decisions about my own health if I don’t have information?” – GetMyHealthData Tracer

HIPAA (you’ll see this on a form you sign every time you go to the doctor’s office) gives you rights over your health information, including the right to get a copy of it. If your providers say HIPAA prevents them from sharing information with you, show them this memo from HHS that specifies your rights to your health data.

Roadblock: You’re told only paper copies are available.

“Records from my primary care physician were available, but VERY limited. My pediatrician did not have electronic records until [my] most recent visit, so all history [was] only [available] on paper. Hospital records require $1/page cost for complete record – [patient] portal only contains records since 2014.” – GetMyHealthData Tracer

You have the right to an electronic copy of your health data if your provider is able to produce it. You can request your data in Microsoft (MS) Word, MS Excel, Portable Document Format (PDF), or as structured data (data stored in fixed fields within a record or file) that can be uploaded into a health application (app). The key is whether your provider has the capability to produce data in the electronic format you request. You may encounter resistance, but the law says it’s an issue of capability, not willingness. If your providers are not aware of this right to an electronic copy, show them this guidance from OCR.

Keep in mind that not all doctors have electronic health record systems, and not all medical records are digital. If you’re requesting records from five or ten years ago, the data may only be available on paper. Your provider may be able to scan a copy of your paper file and send you a PDF version. Under HIPAA, you have a right to ask for this, and your provider has to comply if they are capable.

Roadblock/Obstacle: You’re told emailing records is impossible.

“I attempted to get my data from my primary care doc[tor] in an electronic file sent to my Direct [email] address – the staff did not understand. After some discussion, the best they could offer was a CD that they could either mail to me or I could come pick it up. I received it shortly thereafter in the mail – it is a 47-page PDF of many things and of varying sizes and resolutions – many super small images relative to the others, that I had to expand a thousand percent to read. Incomplete at best.” – GetMyHealthData Tracer

It’s the 21st century and you can receive your health data by email. The law allows providers to send your digital data to traditional email accounts (like a Gmail address) as well secure, encrypted email accounts (like a Direct address). There is a risk that health information sent to traditional, less secure email accounts may be intercepted, but you can choose to accept this risk if you prefer the convenience of this delivery method. More information on transmission methods is available in the recent OCR guidance.

Roadblock: You requested your data months ago and you’re still waiting.

“I completed a long form to request data from one visit. It was denied because they couldn’t find the visit in the system… The denial came back to me in the mail four weeks later. I resubmitted, this time simply asking for all of the information in the system. A denial came back because they needed a credit card on file. I finally made an appointment with my doctor and she [w]as kind enough to print the visit note…  After four months, I finally had the data I needed!” – GetMyHealthData Tracer

Four months is too long to wait for your health data! In most cases, the law requires providers to supply your records within 30 days of receiving your request. If the information you requested is not readily accessible (for example, because your provider keeps it in an offsite storage facility), providers have an additional 30 calendar days to deliver it to you. More information on timelines for providing access is included in the OCR guidance.

Maybe you have faced one of these barriers and have a good strategy for overcoming it. We’d love to hear from you! Share your story so we can help other patients get their health data more easily: https://getmyhealthdata.org/share-your-experience/