PRESS RELEASE: EPIC Launches New Project to Reimagine Health Privacy and Equity in the Digital Age in with Support from the Robert Wood Johnson Foundation 

WASHINGTON, D.C. – With the support of the Robert Wood Johnson Foundation, the Electronic Privacy Information Center (EPIC) is launching a new project to research how privacy laws can best protect health data to maximize equity in the digital age. Through this project, EPIC will assess the current state of health privacy and equity, inform and advise policymakers, regulators, and health officials on the landscape of health privacy, and educate the public about how to best protect their health information. 

“As health-related information becomes increasingly digitized, the lack of adequate privacy protections poses significant risks of exposure through surveillance, data breaches, and data abuse; these risks have an acute impact on individuals in marginalized communities who may not have access to more secure alternatives. When people are forced to choose between protecting their privacy and accessing health services and information, everyone loses. With the support of the Robert Wood Johnson Foundation, EPIC is launching this project to ask: what new privacy protections can be put in place to advance health equity in the digital age?” said Alan Butler, EPIC Executive Director.

This project is supported by the Robert Wood Johnson Foundation’s Ideas for an Equitable Future initiative.

EPIC’s research aims to address questions about how new technologies and the data they collect impact health care access and outcomes. Recent legislation such as Washington state’s My Health My Data Act provides an important rubric for how to advance health privacy and equity. Through this project, EPIC will monitor the implementation of new health privacy laws and evaluate their impact on health privacy and equity. EPIC’s research will culminate in a report that aims to reimagine health protections in light of evolving AI and data systems that pose unique risks to privacy, security, and health equity.

We seek to drive a change in the narrative and practices around the vast amount of health data that is collected by platforms and apps to better center privacy, equity, safety, and transparency. Support from the Robert Wood Johnson Foundation will help to move this important research forward. The views expressed here do not necessarily reflect the views of the Robert Wood Johnson Foundation. 

###

About EPIC

EPIC was established in 1994 to protect privacy, freedom of expression, and democratic values in the information age. Our mission is to secure the fundamental right to privacy in the digital age for all people through advocacy, research, and litigation. EPIC pursues a wide range of program activities, including litigating cases on emerging privacy issues, obtaining and publishing records to lift the veil on government data collection, providing expert advice to policymakers and lawmakers, and facilitating dialogue between advocates, experts, and decisionmakers. EPIC’s Consumer Privacy and Data Protection team seeks to protect users from data abuses and strengthen privacy standards online. Data Protection laws safeguard personal data by regulating the ways private companies and governments store and use data. Visit epic.org for more information.