2016 09:00 AM EST

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 […]

Taking Control: Learn More About Accessing Your Health Information

Posted on January 12, 2016 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—onlythe 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.