Posted on by Dr. Francis Collins
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.