OVERVIEW
Hosted by Executives for Health Innovation (EHI) and the Center for Democracy & Technology (CDT), this webinar was the culmination of a project spearheaded by EHI and CDT and generously funded by the Robert Wood Johnson Foundation (RWJF), which aims to protect consumer data that is both held and used by companies that are not bound by the obligations of HIPAA.

The EHI and CDT Consumer Privacy Framework for Health Data (the Framework) was Released in February 2021. The report addresses the current gaps in legal protections and outlines how non-HIPAA-covered health data should be used, accessed, and disclosed.

A second round of funding from RWJF led to the development of two follow-up reports, The Case for Accountability: Protecting Health Data Outside the Healthcare System, authored by EHI, and Placing Equity at the Center of Health Care & Technology, authored by CDT.

What You’ll Hear:
EHI and CDT gave an overview and discussion of these two reports, in addition to an announcement of BBB National Programs as the organization that has been chosen by EHI to house and run a self-regulatory data use program.

EHI Report: The Case for Accountability: Protecting Health Data Outside the Healthcare System
This report makes the case for why a robust accountability mechanism is needed to govern the use of health data held and used by health tech companies. In the absence of new federal data privacy legislation, EHI has put forward a private-sector solution - a neutral, independently run self-regulatory program that will oversee the data use policies and procedures of Framework members.

• Speaker: Alice Leiter, Vice President & Senior Counsel, Executives for Health Innovation (EHI)

CDT Report: Placing Equity at the Center of Health Care & Technology
The CDT has been evaluating the Framework’s standards through a health equity lens.  Specifically, when deployed, shared and used appropriately, data generated by new and existing technologies has the potential to help us all be healthier and address a history of inequities, including inequities in the provision of physical and behavioral health care. However, for these critical, indeed life-changing, benefits to be realized, we must change certain practices surrounding how consumer health data is collected, shared, and used. In particular, additional safeguards are necessary to ensure that everyone benefits from and enjoys the same protections and opportunities, including consumers and people from marginalized communities. This report aims to identify and address ways in which privacy protections that apply to consumer health information can truly benefit everyone, including communities that have been, and continue to be, underrepresented, overlooked, and harmed by current health data practices.

• Speaker: Andy Crawford, Senior Counsel, Privacy & Data, Center for Democracy & Technology (CDT)

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