A Shared Responsibility: Protecting Consumer Health Data Privacy in an Increasingly Connected World


Learn How the Technology Landscape Is Outpacing Regulatory Protections for Consumer Health Data Privacy, the Challenges Stemming From a Lack of Alignment Between Federal and State Actions, and Options for Advancing an Effective National Privacy Framework for Health Data in a New Manatt Webinar.

Americans are increasingly apprehensive about the privacy of their personal information. A recent Pew Research Center survey found that approximately four out of five Americans are concerned about how their data is used, think the risks of companies collecting their data outweigh the benefits and believe they have little control of their data.1

The concerns are particularly heightened when it comes to health data, which can contain extremely sensitive details. Today, companies that operate mobile apps, search engines, social media platforms and health-oriented websites can have more health information about many of their users than a hospital has about most of its patients. Yet these technology companies typically are not subject to the Health Insurance Portability and Accountability Act (HIPAA) or other health privacy laws. The current pandemic, and the resulting increase in health data sharing, makes the privacy challenges—and the need to solve them—all the more pressing.

In a new webinar—based on a just-published white paper funded by the Robert Wood Johnson Foundation (RWJF)—Manatt examines the current holes in privacy protections, the data use implications for both the industry and consumers, and options for developing a framework for collecting, using and disclosing health data. Key topics include:

  • Why today—more than ever—both consumers and healthcare industry stakeholders need a new framework to protect health data;
  • How today’s “app economy” and consumer data collection are rapidly growing and outpacing regulatory safeguards for health information;
  • Policy options for developing an improved consumer privacy framework for health data, including key considerations and a continuum of health data privacy models; and  
  • Discussion of the merits and challenges of an industry self-regulatory approach in the absence of broader national legislation.

In addition, the eHealth Initiative Foundation (eHI) and the Center for Democracy & Technology (CDT) will provide an update on their separate project, Building a Consumer Privacy Framework for Health Data, designed to address the current gaps in legal protections for health data outside HIPAA’s coverage. With separate funding from the RWJF, eHI and CDT have been working together with a multidisciplinary group of stakeholders to collect diverse perspectives and advance recommendations on preferred pathways to ensure broader privacy protections for such data.

Presenters:

Robert D. Belfort, Partner, Manatt Health
Brenda Pawlak, Managing Director, Manatt Health
Po Yi, Partner, Advertising, Marketing and Media, Manatt, Phelps & Phillips, LLP

Guest Speakers:

Alice Leiter, Vice President & Senior Counsel, eHealth Initiative (eHI)
Andrew Crawford, Policy Counsel, Privacy & Data Project, Center for Democracy & Technology (CDT)

Date and Time

Wednesday, July 15, 2020

1 Pew Research Center, Americans and Privacy: Concerned, Confused and Feeling Lack of Control Over Their Personal Information, https://www.pewresearch.org/internet/2019/11/15/americans-and-privacy-concerned-confused-and-feeling-lack-of-control-over-their-personal-information/.

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