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Robust wellness programs can build a detailed picture of an individual life by combining data collected via health risk assessments, biometric screenings, devices, apps, activity on health portals, health claims, attendance records provided by employers, and public data. Data from apps and devices can be combined with other public or private data, and many device and app features depend on this. By combining data from various sources, the device or app maker might be able to give feedback to the user about their monitored eating and exercise patterns, or notify the user about rewards for which she qualifies. Although all these companies collect, use and disclose data related to a wellness program, none is subject to the HIPAA Privacy Rule.

Join CDT and other experts in a high-level conversation on the intersection between personal health data, emerging technologies like wearables, and employee wellness programs. The panel will explore the privacy implications of employee wellness programs as well as recent policy developments that may end up neutralizing key health privacy laws like the Americans with Disabilities Act and the Genetic Information Non-disclosure Act.

Michelle De Mooy is Deputy Director, Consumer Privacy Project at the Center for Democracy & Technology. Her work is focused on promoting strong consumer privacy rights through pro-privacy legislation and regulation, working with industry to build and implement good privacy practices, and analyzing emerging privacy concerns. Michelle currently sits on the Advisory Board of the Future of Privacy Forum, a privacy think tank, and has been a panelist and featured speaker at many events related to digital privacy, including Federal Trade Commission workshops, the Internet Governance Forum, Health Privacy Summit, and the State of the Mobile Net.

Ann Waldo is the Principal in the boutique law firm of Waldo Law Offices, PLLC, in Washington, DC. She provides legal counsel, compliance strategy, contracting, public policy, and government advocacy regarding privacy and health information management. She focuses on both HIPAA/HITECH and consumer health privacy. She is particularly fascinated with novel issues involving health data and innovative technology. She has counseled a state Health Information Exchange, has been a grant advisor to the Office of the National Coordinator on Health Information Technology (ONC), has served on a Certification Commission for Health Information Technology work group, has been an advisor to a Harvard information technology grant, and has served on the Consumer Empowerment workgroup of the federal Health Information Technology Policy Committee. An active participant in the Healthcare Leadership Council’s Confidentiality Committee, she currently serves as a Key Advisor to the Health Data Exploration project supported by the Robert Wood Johnson Foundation.

Emily B. Read is a Senior Staff Attorney at the Judge David L. Bazelon Center for Mental Health Law, where she litigates employment, education and mental health systems reform cases, and engages in policy advocacy in the areas of employment and criminal justice. Before joining the Center, Emily directed the Equal Employment Opportunity Project at the Washington Lawyers’ Committee for Civil Rights and Urban Affairs. She also previously practiced with a private civil rights firm, was a Teaching Fellow and Staff Attorney for two clinical programs at the Georgetown University Law Center, and was a Patients’ Rights Advocate with the Mental Health Advocacy Project of the Law Foundation of Silicon Valley. Emily holds a B.A. from Cornell University, a J.D. from the Northeastern University School of Law, and an L.L.M. from the Georgetown University Law Center.

Deborah Chalfie has 40 years of experience as an advocate for economic security and justice, civil rights, and consumer protection. She is a Senior Legislative Representative on the Financial Security team in AARP’s Government Affairs Department. There, she works to advance AARP’s legislative and regulatory policy agenda on older worker and employment issues, including employment discrimination, unemployment and workforce development. Before working at AARP, Ms. Chalfie most recently was the Director of Policy and Legislation for Change to Win (a partnership of labor unions), focusing on labor law reform and enforcement of worker protection laws; and Senior Counsel on family economic security and employment issues at the National Women’s Law Center. Ms. Chalfie holds a Master of Laws degree in advocacy from Georgetown University Law Center and a Juris Doctor degree from the National Law Center at George Washington University.

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