Your Health and Your Privacy: Protecting Health Information in a Digital World

Chairman Franken and Members of the Subcommittee:

On behalf of the Center for Democracy & Technology (CDT), I thank you for the opportunity to testify today.

The Center for Democracy and Technology (“CDT”) is a non-profit Internet and technology advocacy organization that promotes public policies that preserve privacy and enhance civil liberties in the digital age. As information technology is increasingly used to support the exchange of medical records and other health information, CDT, through its Health Privacy Project, champions comprehensive privacy and security policies to protect health data. CDT promotes its positions through public policy advocacy, public education, and litigation, as well as through the development of industry best practices and technology standards. Recognizing that a networked health care system can lead to improved health care quality, reduced costs, and empowered consumers, CDT is using its experience to shape workable privacy solutions for a health care system characterized by electronic health information exchange.

We are at an important juncture in the effort to build a health care ecosystem powered by information technology. The nation is at the beginning of a five-year commitment to achieve widespread adoption and use of electronic medical records by health care providers. The health care system suffers from unsustainable costs and uneven or poor quality, and increased digitization and more robust sharing of health information is widely seen as key to reversing these trends. At the same time, the public consistently expresses concern about the privacy and confidentiality of digital health records. Changes to federal health privacy laws enacted by Congress in 2009 have not been implemented due to regulatory delays, and breaches of electronic health data are far too common.

Failure to build and maintain public trust in the collection and sharing of electronic health information will doom efforts to leverage health information technology (health IT) to promote innovation in the health care sector. In this testimony we discuss some of the key privacy and security challenges that will need to be addressed in order to provide a firm foundation for realizing the benefits of health IT.

Read the complete testimony here.