CDT Joins With Health Privacy Project to Create Major Voice In Health Data Field

WASHINGTON, DC - March 11 - Today the Center for Democracy & Technology (“CDT”) announces the launch of a major project on health privacy and information technology. To fulfill an ambitious agenda CDT is joining forces with the Health Privacy Project, which for ten years has been an independent organization headed by privacy pioneer Janlori Goldman. The Health Privacy Project will become part of CDT and a new Project Director will lead the expanded effort.

“The combined strength of these organizations creates a program uniquely qualified to address the privacy challenges posed by the electronic exchange of personal health information,” said Leslie Harris, President and CEO of CDT. “The potential of health information exchange will be realized only if privacy is addressed,”
Harris said.

Goldman, who helped to found CDT in 1995, has long been a national leader on privacy and health records. She played a key role in the debate leading to the enactment of the Health Insurance Portability and Accountability Act (HIPAA) of 1996 and led the effort to promulgate the federal health privacy regulations. In 1997, she created the Health Privacy Project (HPP). Since 2004, she has split her time between the HPP and Columbia University. “Janlori Goldman and the Health Privacy Project have been on the cutting edge of issues impacting health privacy for more than a decade,” said Harris.

As the Health Privacy Project today returns to its roots at CDT, Goldman steps aside as the project’s director, but will remain as a senior advisor.

CDT is pleased to announce it has hired Deven McGraw as new director of the Health Privacy Project. McGraw, herself an established leader in health policy and information privacy, most recently served as Chief Operating Officer for the National Partnership for Women & Families, where she provided strategic direction for the organization and also headed its work on health information technology. She currently co-chairs the Confidentiality, Privacy and Security Workgroup within the American Health Information Community and serves on the Policy Steering Committee for eHealth Initiative.

“Having been privileged to work with Deven for many years, I am thrilled that she is taking over leadership of the Health Privacy Project,” Goldman said. “Deven’s skills and perspective fit perfectly with CDT’s commitment to consensus building and pragmatic solutions.”

The Need for Credible, Balanced Solutions to the Health Privacy Challenge

It is widely recognized that developments in health information technology (HIT) have the potential to improve health care quality, reduce costs and empower consumers to play a greater role in their own care. However, little progress has been made on resolving the privacy issues associated with the growing liquidity of personally identifiable health information.

“This is a critical time for health information privacy. Technologies are being deployed and systems are being designed that will have a far-reaching impact on how personal health information is accessed, stored, and shared,” said McGraw. “Consumers want the benefits of HIT-enabled healthcare and they want assurances that their privacy will be protected,” McGraw said. “We can and must move forward on both fronts.”

An Ambitious Agenda for Health Privacy
CDT’s Health Privacy Project will take on key policy questions, including: the proper role of notice and consent, the right of patients to access their own health records in electronic formats, identification and authentication, secondary uses, and enforcement mechanisms. It will address both the traditional exchange of records among providers and payers, as well as new consumer access services and Personal Health Records.

The project will work with consumer advocates, health care providers, employers, technologists, government agencies, policy makers, developers and vendors of products and services, to promote acceptance and implementation of privacy policy solutions.

“One of our first priorities is to analyze and respond to the HIT-related bills pending before Congress,” said McGraw. “These bills offer an opportunity to take some critical first steps in improving health information privacy,” McGraw said. “Then we will work over the next year to develop and build support for a more comprehensive set of policy proposals that address the complex reality of integrating information technology into healthcare.”

Major Support Provided by Markle Foundation

CDT's new Health Privacy Project will engage in a major undertaking with the Markle Foundation and its Connecting for Health Collaborative. The new initiative will support and extend the groundbreaking policy and technical resources that were developed by Connecting for Health to support private and secure health information exchange. "We will be building on the rich output of Markle's Connecting for Health initiative," said Harris. Additionalsupport is being provided by the California Healthcare Foundation.

The Center for Democracy & Technology is a non-profit public interest organization working to keep the Internet open, innovative,  and free. With expertise in law, technology, and policy, CDT seeks  practical solutions to enhance free expression and privacy in communications technologies. CDT is dedicated to building consensus among all parties interested in the future of the Internet and other new communications media.