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Taking Control: Learn More About Accessing Your Health Information

Posted on by Dr. Francis Collins

Woman looking at electronic medical records on her smartphone

Credit: Lydia Polimeni, NIH

Usually, I share cool science advances and major medical breakthroughs on this blog. But, today, I’d like to share something a little different, something of great importance for both your health and the advancement of biomedical research: new guidelines on how you can access your own health information.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule has long supported the right of individuals to request and obtain copies of their medical records and other health information maintained by health-care professionals, medical facilities, and health insurance plans. However, due to the increasing use of online health-information technology and growing interest among Americans in being active participants in health-related decisions, the U.S. Department of Health and Human Services (HHS) recently issued much-anticipated guidance that serves to answer common questions and clarify key issues regarding access to health information under HIPAA. Think of it as a valuable personal roadmap for navigating a part of health care that is all-too-often confusing and frustrating!

Among the many reasons that people need easy, affordable access to their health records is to empower them to take more control over decisions regarding their health. Such information can help individuals improve their ability to monitor chronic conditions, stick with treatment plans, track progress in wellness programs, and identify and correct erroneous information. In addition, some people may want such access so they can directly contribute their health information to biomedical research projects. One such endeavor is the new, NIH-led Precision Medicine Initiative Cohort, in which 1 million or more volunteers will agree to share data, including information from their health records. Maintaining the security and privacy of individual information will be of paramount importance. In return, participants will have the highest levels of access to their study results, along with summarized results from across the cohort.

The new guidance, developed by HHS’s Office for Civil Rights, is presented in an easy-to-read fact sheet, followed by an extensive list of frequently asked questions (FAQs). Among the issues clarified in the guidance are the fees that can be charged for accessing health information—only the cost of labor, supplies, postage, and, if agreed to by the requester, preparation of a summary or explanation. The guidance also explicitly states that an individual has a right to ask a doctor or other health-care entity to transmit their health information directly to another person or entity designated by the individual in writing. Also set forth are requirements for furnishing health information in electronic format upon request, timelines for providing access, and grounds for denial of access.

While I urge each of you to check out all of these documents yourself to become a more informed participant in you and your loved ones’ health care, let me leave you with a small sampling of the many situations covered by the FAQs.

  • Q: How long does a doctor or other health-care entity have to respond to an individual’s request for access to her health information? A: No longer than 30 calendar days, but most requests should be fulfilled well before then.
  • Q: Does an individual have a right to an electronic copy of her health information? A: Yes, in most cases. If the information is on paper and an electronic copy is requested, the doctor or other health-care entity should make every effort to convert it to electronic form, e.g. scan the paper record into an electronic format.
  • Q: Does an individual have a right to get copies of their X-rays or other diagnostic images? A: Yes, but the large file size of some X-rays or other images may affect how they are accessed. For example, some image’s electronic files may be too large to send through e-mail.
  • Q: Can a doctor or other health-care provider deny an individual’s request for access to health information because she has not paid her health-care bill? A: No. However, the doctor or other health-care provider may charge a reasonable, cost-based fee for a copy of the health information.
  • Q: Does an individual have a right to access health information about herself that is very old? A: Yes. An individual has a right to access health information about herself regardless of the date when the information was created or whether the information is stored on-site or archived remotely.


Individuals’ Right under HIPAA to Access their Health Information 45CFR § 164.524 (HHS)

Right to Access Medical Records, FAQs for Professionals (HHS)

When and Where You Need it Most: Your Rights to Access and Transmit Your Health Information (Office of the National Coordinator for Health Information Technology/HHS)

Understanding Individuals’ Right under HIPAA to Access their Health Information (Office for Civil Rights/HHS)

Precision Medicine Initiative Cohort Program (NIH)



  • Victor A. MD says:

    I was delighted to read the info on HIPAA privacy rules. The reality is a little bit different. I give an example: Kaiser Permanente is very reluctant to reveal the personal health information . By courtesy I spoke on the phone with a nurse twice regarding my wife’s high cholesterol / lipid profile/ Lipitor prescription, filled out the authorization form and mailed it few months ago. There is still no response. Perhaps, hard reboot is required to restore KP functionality and HIPAA mismanagement!

  • cathy S.F. says:

    I have a very rare cancer, SDHB deficient gist, and have some research labs doing complete genomes on my DNA and RNA. As a patient I can’t access these results. The research doctors say it is against the law to send them to a research patient. I also had a complete genome done at NIH by Dr. Helman and his team and have never received that report. I recently had problems getting my oncologist to send my tumor samples to NIH for analysis. As a proactive patient, trying to survive a currently “no cure” cancer, do I have any rights to my results done through research universities?

    • Moderator says:

      The recent guidance issued by HHS on individuals’ right under HIPAA to access their health information at this time addresses only test results and other information held by clinical, rather than research, laboratories that are covered under HIPAA. Access to laboratory test results is governed by the Clinical Laboratory Improvement Amendments (CLIA) of 1988, which prohibits disclosure of results for clinical purposes from laboratories that are not certified to perform clinical testing. Many research laboratories are not CLIA-certified and therefore currently cannot return results to individuals from the tests they perform as part of research. The government is considering options for addressing situations when individuals request access to results from laboratories that are not CLIA-certified.

      • cathy S.F. says:

        My life is measured in three month intervals between scans. When I have surgery I contact the research labs who might want fresh tissue. I feel if I’m offering my organs for their research and am already Stage IV I should be able to access the results. My life might depend upon it whether the research lab is CLIA certified or not.

  • S.F. says:

    while the more information we obtain is of great benefit, what we do with that information afterward, would be wiser considered. “What are my options”?

  • S.F. says:

    I recall paying $25.00 at a city hospital for my dads charts. I wonder what a private hospital charges…yikes!

  • Jennifer C Wiggins says:

    Im trying to get my medical records dating back from 1988-1979 and perhaps earlier they are trying to tell me that what they have given me is all they have I need my medical records I dont understand how they can tell me they dont have them since I was born in the very same hospital and recieved care there including 3 births since I was born Im not sure how to approach this or who I need to speak to

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