Introduction and Purpose (FAQ 2 of 65)
2. Where Else Can I Find Help?
If you want the official view -- as well as the text of the federal health rule known as HIPAA and related materials -- go to the website of the Office of Civil Rights (you will often see this office referred to as OCR) of the federal Department of Health and Human Services (HHS) at www.hhs.gov/ocr/hipaa. The website offers fact sheets, FAQs, formal summaries of the HIPAA privacy rule, and more. The official materials are formal and even useful at times, but there is a lot to wade through. We seek to tell it like it is. The Office of Civil Rights tells it like it is supposed to be. Both views have relevance.
Why does responsibility for the federal health privacy rule rest with the Office of Civil Rights? The Department had to put the health privacy function somewhere, and it chose the Office of Civil Rights. The Office of Civil Rights is also supposed to enforce violations of the HIPAA privacy rule. Some complain that the Office of Civil Rights is not very focused on health privacy. It didn't bring enforcement actions for years after the health care world had to comply with health privacy rule.
You can find other guides to HIPAA on the Internet, however most of them are designed to help health care providers like hospitals and doctors comply with the law. Hospitals and health plans sometimes offer patient-oriented privacy materials. Overall, we were surprised at how few free, detailed patient-oriented materials are available.
The Center on Medical Record Rights and Privacy at Georgetown University's Health Policy Institute has a good website that concentrates on patient access rights. The Privacy Rights Clearinghouse has a wealth of materials on privacy in general as well as some facts sheets on medical privacy (www.privacyrights.org/medical.htm#FactSheets). You have to look carefully to see if the information on these websites is current.
The HIPAA rule may not be the only health privacy law relevant to you. The federal HIPAA rule establishes what is called a “floor” of privacy protection. If state law or another federal law gives you more rights, greater access to your medical records, more limits on disclosure, or lower fees for copies of your medical records, then those other laws supersede HIPAA. This can be very important at times. The Health Policy Institute website can be a useful source of information about state law. Another site is the Health Privacy Project. Be aware that state laws change, and the information on any state law website can easily be outdated. Pay attention to the dates of any discussion of state laws. The resources at the Health Privacy Project are useful but have not been updated for years.