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eHealth Initiative Foundation and Center for Democracy & Technology Launch Effort: “Building A Consumer Privacy Framework for Health Data”

With funding from the Robert Wood Johnson Foundation, eHealth Initiative Foundation (eHI) and the Center for Democracy & Technology (CDT) are collaborating on Building a Consumer Privacy Framework for Health Data, designed to address the current gaps in legal protections for health data outside HIPAA’s coverage. Large amounts of data fall through these gaps, including from wellness apps, wearable devices, and informational online health sites.

A steering committee of experts and leaders representing healthcare, technology, advocacy groups and consumers has been formed to discuss proactive steps to protect the privacy of health data that falls beyond the bounds of current health privacy laws. The Steering Committee for Consumer Health Privacy will review potential approaches to addressing the complexities of protecting non-HIPAA data, the appropriate way to define such data, and preferred pathways for industry and stakeholder action.  A diverse and dynamic group of participants attended the Steering Committee’s kick-off meeting yesterday in Washington, D.C.

“Our unique focus is evaluating ‘health-ish’ data that is not protected by HIPAA or other health privacy laws,” says Jennifer Covich Bordenick, Chief Executive Officer of eHI. “It is critical that we bring a broad and inclusive array of collaborators to the table to work through some of the key concerns.” Consumer groups, privacy experts, and companies that manage wearable, genomic and social media data, among others, are invited to engage with the project.

“Consumers are increasingly skeptical of how their data is being used, with health-related data being especially sensitive” says Lisa Hayes, Interim Co-Chief Executive Officer of CDT. “Our hope is that this framework is a first step to providing greater privacy rights and protections for consumers who want to take advantage of innovative digital health and wellness services.”  In addition to the Steering Committee, there will be smaller workgroups that will meet throughout 2020 to develop specific aspects of the Framework.

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A partial list of participants in yesterday’s meeting is below:

  • 23andMe
  • American College of Physicians
  • Ancestry
  • AI Now Institute
  • American Cancer Society
  • American Hospital Association
  • Ascension
  • Change Healthcare
  • Children’s National Hospital
  • Citiizen
  • CVS Health
  • Datavant
  • Electronic Frontier Foundation
  • Elektra Labs
  • Evidation
  • Fitbit
  • Future of Privacy Forum
  • Georgetown Institute for Technology Law and Policy
  • Google
  • GW School of Medicine
  • Hispanic Technology and Telecom Partnership
  • Hogan Lovells
  • Marshfield Clinic Health System
  • Microsoft
  • National Partnership for Women & Families
  • New America’s Open Technology Institute
  • Pew Charitable Trusts
  • Salesforce
  • Teladoc Health
  • Under Armour
  • University of Nebraska Governance and Technology Center
  • Waldo Law Offices
  • Wellmark Blue Cross and Blue Shield
  • Yale University


About eHealth Initiative Foundation

eHealth Initiative Foundation (eHI) convenes executives from every stakeholder group in healthcare to discuss, identify and share best practices to transform the delivery of healthcare using technology and innovation. eHI, and its coalition of members, focus on education, research, and advocacy to promote the use and sharing of data to improve health care.  Our vision is to harmonize new technology and care models in a way that improves population health and consumer experiences. eHI has become a go-to resource for the industry through its eHealth Resource Center. For more information, visit

About the Center for Democracy & Technology

CDT works to strengthen individual rights and freedoms by defining, promoting, and influencing technology policy and the architecture of the internet that impacts our daily lives. Its team of experts have knowledge of issues pertaining to the internet, privacy, security, technology, and intellectual property. CDT brings together thought leaders to find innovative and practical solutions to the policy challenges surrounding the Internet by providing leadership and advocacy to help shape public policy and industry best practices while providing a forum for stakeholder dialogue.