Having trouble getting your health data? Check out the tips and resources below to help you better understand and demonstrate your rights to your health information.
Also, please be sure to tell us what happens! Your feedback will help us to identify roadblocks and create tools and resources for consumers to better navigate the system and more easily get their health information.
You’re told that HIPAA prevents your provider from sharing any information with you, the patient.
Response: Breathe, smile, and use this memo from the federal government to demonstrate your rights.
They must provide you with a copy or a summary of your health information, usually within 30 days of your request.
Response: You have a right to an electronic copy of your records, if those records are kept electronically. Use this memo from the federal government to demonstrate your rights.
You’re told you can only get paper copies.
You’re told you can’t receive your records by email.
Response: The federal government recently clarified in the guidance that patients may choose to receive copies of their medical records by e-mail.
Learn More: E-mail Delivery
You can securely communicate with your doctor by providing them with your “Direct” address. Direct works just like email but has extra security features built in to help protect health information. Use this letter from the National Association for Trusted Exchange (NATE) to request your health information be sent to your Direct address. For additional information about Direct for consumers learn more here.
There is a risk that the e-mail may be intercepted and the contents – including the medical records – accessed by an unauthorized person. You can choose to accept that risk because you prefer the convenience of having these records sent by e-mail. Cite page 5634 of this document in volume 78 of the Federal Register.
Response: Recent guidance from the federal government encourages providers to offer patients electronic copies of their health information free of charge.
You’re told you will be charged for your record.
Learn More: Fees
The policy further clarifies when and how patients can be charged fees for their health data, including:
- No more charging for patient portal access through certified EHRs;
- No more per-page fees for electronic copies; and
- No more surprise fees; providers must inform the individual in advance of the approximate fee that may be charged.
The law allows covered entities (that’s the legal word for organizations that hold personal health information about you) to charge for the reasonable costs for copying and mailing the records (including providing the electronic information on a CD-ROM or USB drive). They cannot charge you a fee for searching for or retrieving your records.
Fees may vary by state, please check out this article for more information.
Note: A provider cannot deny you a copy of your records because you have not paid for the services you have received. Use this FAQ from the federal government if necessary.
The patient portal is broken, you can’t download it, or it doesn’t have the information you are requesting.
Response: Request additional information using one of the methods outlined in the How to Request section. By requesting an electronic copy of your records, you may be able to see more information than is available to view on a portal.
Note: You do not have the right to access a mental health professional’s psychotherapy notes, which are kept separate from the patient’s medical and billing records.
Response: You will need to verify your identity, but in-person verification is not required. Ask to verify your identity through other means, such answering questions over the phone (confirming your address, etc.).
You’re told your records request and/or pick-up must be made in person.
Learn More: Access to Electronic Copies
However, don’t forget that if your provider is participating in the Meaningful Use program, they need to provide a means for you to electronically download your health information. This is often done through a patient portal, so ask your provider about this option.
Note: You do not have the right to access a mental health professional’s psychotherapy notes, which are kept separate from the patient’s medical and billing records.
You are denied access to information about another person for whom you are caring (i.e. child, spouse, elderly parent).
Response: You have the right to have your provider (or health insurance plan) send a copy of your records to someone else. Use this memo from the federal government to demonstrate your rights.
Learn More: Personal Representatives
Generally, a provider must allow a “personal representative” you designate to inspect and receive a copy of protected health information. A personal representative is someone who by law is authorized to act on an individual’s behalf and can be named several ways; state law may affect how a person becomes a personal representative. For more information, be sure to check out this page on the US Department of Health & Human Services website regarding personal representatives.
Response: First, call to confirm your provider has received your written request. Sometimes, things fall through the cracks. Next, ask to see the provider’s Notice of Privacy Practices, which should include the contact information for a privacy official who can help.
You’ve submitted a request in writing and received no response.
Learn More: Filing a Complaint
If you feel your rights to your health information have been violated (or you feel your health information has been used in an unlawful way), you may file a complaint with the federal Office for Civil Rights (OCR). OCR can investigate complaints against covered entities and their business associates. File your complaint with the U.S. Department of Health & Human Services.
You’ve received the records you requested (hooray!) but there are mistakes or missing information you want to correct.
Response: You can ask to change any wrong information in your file or add information to your file if you think something is missing or incomplete. Even if the provider believes the information is correct, you still have the right to have your disagreement noted in your file. Show your provider this website outlining your right to request a change to your record.
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