The HIPAA Privacy Rule gives individuals a fundamental right to be informed of the privacy practices of health plans and health care providers, as well as to be informed of their privacy rights with respect to their personal health information. Health plans and covered health care providers are required to develop and distribute a notice that provides a clear, user friendly explanation of these rights and practices1. In practice, however, many patients have found that these notices can be difficult to read and poorly comprehended.2
The Office of the National Coordinator for Health Information Technology (ONC) recently collaborated with the Office for Civil Rights (OCR) to develop model notices of privacy practices (NPP) that clearly convey the required information to patients in an accessible format. These model notices can be customized by covered entities (doctors, hospitals and other health care providers covered by HIPAA who maintain patient data, health plans) and then printed for office display and distributed to patients.
The new model notice resources offer an opportunity to improve what covered entities display online. Research shows that online privacy policies are often not read or well-understood by the general public3. As in the case of privacy notices displayed in medical offices, if patients cannot understand what they are reading online, they will not be properly informed of their privacy rights, including their right to access their health information. A patient’s understanding of his or her privacy rights is an important component of quality health care and can impact patient-provider communication as well as patient engagement in health care.
The Digital Privacy Notice Challenge leverages the consumer tested and preferred content and formats developed recently as part of the joint ONC/OCR model NPP project and provides an award to the creators of the best online versions of an NPP. Out-of-the-box thinking could be effectively applied to the challenge of creating an online NPP that patients would actually read and understand, helping to break down the barriers to patients taking greater control of their own health and health care. We hope to bring a variety of creative minds to the task of developing a patient friendly resource, as well as enable users to interact with the proposed notices and identify the most effective approaches.
1 145 CFR 164.520
2 https://www.privacyrights.org/ar/HIPAA-Reading.htm
3 Turow, Hoofnagle, Mulligan, Good and Grossklags. The Federal Trade Commission and Consumer Privacy in the Coming Decade. I/S – A Journal of Law and Policy for the Information Society. 740. (2008).