Manatt and the Robert Wood Johnson Foundation Release Considerations for Developing a Consumer Health Data Privacy Framework

Paper highlights gaps in existing health data privacy protections and lays foundation for the development of new privacy framework for consumer health data in an increasingly connected digital ecosystem.

Manatt, Phelps & Phillips, LLP, a multidisciplinary, integrated professional services firm, announced today the release of A Shared Responsibility: Protecting Consumer Health Data Privacy in an Increasingly Connected World. Manatt Health, the firm’s healthcare legal and consulting group, developed the white paper with the support of the Robert Wood Johnson Foundation to examine the gaps in existing health data privacy protections, the implications these gaps may have for consumers and healthcare industry stakeholders, and options for advancing a forward-looking data privacy framework.

Recent federal interoperability rules promise an unprecedented liberation of health data with app-based standards set to disrupt historical data silos, creating new pathways for the exchange of health information. At the same time, new payer and provider data-sharing requirements will equip consumers with an increasing amount of actionable information to guide their healthcare choices. However, as warned by health data privacy experts, the rapid increase in health data liquidity—while beneficial to consumers, patients and marketplace competition—is also outpacing the development of regulatory safeguards to protect the public.

“As the amount of available electronic health data continues to rapidly increase—and especially as the value of interoperable health data has been brought to the forefront by the COVID-19 pandemic—it is more critical than ever for the industry to develop a new framework that provides comprehensive privacy protections for consumers’ health information,” said Bill Bernstein, leader of Manatt Health. “Safeguards must be established in order to keep up with the collection and use of information that falls outside the bounds of current health privacy laws.”

The paper includes analysis of current health privacy laws and their limited applicability to health information not protected under HIPAA and other related laws. It also highlights serious challenges these limitations create in relation to trust, liability and transparency between companies and consumers. Lastly, it outlines a continuum of potential options to improve patient health, enhance patient experience and reduce healthcare costs through the use of digital health data, including an analysis of self-regulatory options that have been utilized in other industries, along with insights and lessons from those models that may be applicable to health data.  

Given the increased attention placed on consumer privacy, the eHealth Initiative Foundation (eHI) and the Center for Democracy & Technology (CDT), in a separate project funded by the Robert Wood Johnson Foundation, are collaborating on an initiative entitled Building a Consumer Privacy Framework for Health Data. This project is designed to address these current gaps in legal protections, and will be guided by a Steering Committee made up of experts and leaders representing healthcare, technology, and advocacy groups and consumers. The project will incorporate insights and analyses from the white paper released today in the Steering Committee’s work to identify preferred pathways and actionable steps to identify and recommend additional consumer health privacy protections. Not only will their proposal recommend meaningful protection for consumers with respect to the collection and use of their health information, it will also help create a standard set of protections for companies to adopt, indicating a commitment to act responsibly with respect to protecting all of their users’ data.

To access the full paper, please click here.



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