Report Introduces an independently governed self-regulatory program for non-HIPAA-covered health data, managed by BBB National Programs.
Washington, DC – March 24, 2022 – Today, Executives for Health Innovation (EHI) released the report, The Case for Accountability: Protecting Health Data Outside the Healthcare System, which makes the case for why a robust accountability mechanism is needed to govern the use of non-HIPAA-covered 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 the previously released EHI and Center for Democracy & Technology (CDT) Consumer Privacy Framework for Health Data (the Framework).
Since the early 2000s, the Health Insurance Portability and Accountability Act (HIPAA) has been the nation’s primary health privacy law, protecting patient data held by the healthcare system – hospitals, doctors, clinics, and health insurers. But with the explosive proliferation of digital technologies, an ever-increasing amount of health data is generated by consumers themselves. This data is both held and used by companies that are not bound by the obligations of HIPAA, leaving that data largely under-protected and under-regulated.
With the generous support of the Robert Wood Johnson Foundation (RWJF), EHI and the CDT released the Framework in February of 2021. This Framework 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.
In January 2022, EHI launched a Request for Proposals from organizations interested in housing and running the Framework’s self-regulatory program. After careful consideration of the proposals submitted by an independent, objective committee of experts, EHI is delighted to announce that it has selected BBB National Programs to implement and house this new program, overseeing compliance with the Framework and protecting consumer health data not bound by the obligations of HIPAA. Learn more.
“Industry self-regulation has a long history of success when conducted by an independent organization for a business sector committed to enhancing consumer trust,” said Eric D. Reicin, President and CEO, BBB National Programs. “EHI’s selection of BBB National Programs as the independent accountability agent for the Framework’s health data protection principles is an honor for our team. We look forward to working with responsible companies ready to demonstrate their commitment to getting consumer health data protection right.”
“Health technology companies, providers, consumers and academics worked tirelessly to develop these standards for health data. The accountability component of the Framework is the linchpin to making this work a reality.” said Jen Covich Bordenick, CEO of EHI. “BBB National Programs is a trusted voice with consumers and is the perfect partner to help launch this crucial work.”
About Executives for Health Innovation
Executives for Health Innovation (EHI) is a catalyst for healthcare transformation, convening diverse leaders from across the industry to unlock opportunities for collaborative innovation. EHI, along with its coalition of members, focuses on education, thought leadership, and advocacy. We believe that innovation and diverse perspectives power the transformation of healthcare. Our members are working toward consumer-centered health that is lower cost, higher quality, and more accessible for all populations. To learn more, visit ehidc.org
About BBB National Programs
BBB National Programs is where businesses turn to enhance consumer trust and consumers are heard. The non-profit organization creates a fairer playing field for businesses and a better experience for consumers through the development and delivery of effective third-party accountability and dispute resolution programs. Embracing its role as an independent organization since the restructuring of the Council of Better Business Bureaus in June 2019, BBB National Programs today oversees more than a dozen leading national industry self-regulation programs and continues to evolve its work and grow its impact by providing business guidance and fostering best practices in arenas such as advertising, child-directed marketing, and privacy. To learn more, visit bbbprograms.org.