Privacy & Cybersecurity

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Data Analytics Workgroup: Health Data Privacy & Unintended Consequences

eHI members are invited to join a Data Analytics Workgroup meeting at 2 p.m.. eHI will update its workgroup members on the feedback we have received on our Draft Consumer Privacy Framework for Health Data, a project undertaken in partnership with the Center for Democracy & Technology. Made possible with funding from the Robert Wood Johnson Foundation (RWJF), the Framework identifies and describes the current gaps in legal protection for health data outside of HIPAA’s coverage, as well as the standards and rules that should govern them.

Maverick Health Intelligence: Only What Matters on Health Information Policy (article)

September 03, 2020

The Federal Trade Commission (FTC) has at least one friend, and no, it is not Mark Zuckerberg -- her name is Alice. On a webinar to explain the eHealth Initiative and Center for Democracy & Technology’s Draft Consumer Privacy Framework for Health Data, eHI’s VP and Senior Counsel Alice Leiter announced that the new framework is an effort to “help out the FTC” so the agency is not overwhelmed by having to police every element of health data that is not regulated by HIPAA. The purpose is to propose a comprehensive consumer health data protection scheme, like GDPR or CCPA, and to complement or go further than other self-regulatory codes of conduct (CARIN Alliance, FTC Best Practices for Mobile Health App Developers, Network Advertising Initiative). The draft tries hard to define the ever-elusive concept of “consumer health data” and proposes specific protections and natural exceptions (i.e., research, to prevent death or injury). With Robert Wood Johnson Foundation funds, this was a serious effort with serious experts contributing serious time -- even the Better Business Bureau is being considered as a possible home for the new membership entity that vets, enrolls, and monitors its members. Maybe take a look at the draft and comment by September 25, 2020 -- just email FTC’s BFF at Alice may be the best friend the FTC has had in a long time.

Draft Guidelines Introduced to Protect Consumer Data on mHealth Platforms (mHealth Intelligence Article)

September 03, 2020

Draft Guidelines Introduced to Protect Consumer Data on mHealth Platforms

The Draft Consumer Privacy Framework for Health Data aims to set standards for the collection, use and protection of health data on smartwatches, fitness bands, mHealth apps and other consumer-facing technology.

CDT, eHI Unveil Draft Consumer Health Data Privacy Framework (Article, Health IT Security)

September 03, 2020

CDT, eHI Unveil Draft Consumer Health Data Privacy Framework

Drafted in collaboration with providers, tech giants, and advocacy groups, the consumer health data privacy framework provides standards for health data not protected by HIPAA regulations.

Draft Consumer Privacy Framework for Health Data

August 26, 2020

August 26, 2020 – Today the eHealth Initiative & Foundation (eHI) and the Center for Democracy and Technology (CDT) released A Draft Consumer Privacy Framework for Health Data. The Framework includes a description of the health data that warrant protection, as well as the standards and rules that should govern them. The Framework also includes a self-regulatory model that would hold companies accountable to these standards and rules. The work is the first output of a collaborative effort addressing gaps in legal protections for consumer health data outside of the Health Insurance Portability and Accountability Act’s (HIPAA) coverage. The collaboration was funded through a grant by the Robert Wood Johnson Foundation.

The public is invited to review the draft framework and offer constructive feedback by Friday, September 25, 2020 in the form below. 

POLITICO - Donate Your Data: The Covidseeker Research Project

July 27, 2020

DONATE YOUR DATA: Americans are plenty wary of having their every move tracked in real time, even if it’s to fight Covid-19. But what about our past movements? POLITICO's Katy Murphy reports that researchers at UC San Francisco think they found a less intrusive way to get at this very personal information: asking people who were tested for Covid-19 to share location tracking data on their smartphones from around the time of their potential exposure.

That data can reveal “the actual timing and the very specific geolocation of where someone potentially was infected with Covid-19,” said Yulin Hswen, a computational epidemiologist. Multiply that by thousands of cases, and scientists could gain a better sense of how the virus spreads most easily — whether by taking public transportation, eating in a common area or just talking across the fence to a neighbor.

The Covidseeker research project is starting with Californians but could be expanded nationally. The researchers will share aggregated information and summary reports with public health officials, Hswen said, but retain access to individuals’ data.

WEBINAR: COVID-19 Contact Tracing: Status, Challenges and Lessons Learned

July 28, 2020

Learn How Contact Tracing Works, the Inherent Issues It Raises, the Implications for Privacy and What We Can Learn Other Countries Experiences

As the COVID-19 pandemic continues to rage, countries around the world have turned to contact tracing—tracking down people who may have been exposed to the virus—to mitigate the spread. In the U.S., states from New York to Utah to Alaska are hiring thousands of tracers or retraining state workers to take on tracing responsibilities. Together with widespread and speedy testing, tracing is seen as a critical weapon in our arsenal against the virus.

But how does tracing really work—and how effective is it? What challenges does it present? And what lessons can we apply from countries who have implemented tracing before us? In a new webinar, Manatt and the eHealth Initiative Foundation (eHI) share the answers.

Key questions the program will address include:

· What is contract tracing--and what are its inherent issues?

· How well is tracing working where it’s underway—and what can we learn from real-world case studies in LA County, New York and more?

· What are contact tracing apps—and how do they work?

· What is the implementation status of contact tracing apps in the United States?

· How have other countries employed contact tracing technologies? How effective have they been? And what challenges have arisen?

· What are the privacy implications of contact tracing technologies?

· What can we learn from other countries’ experiences about how to successfully manage the roll-out of contact tracing technologies, achieve widespread consumer buy-in and protect the data being collected?



Benjamin Chu, M.D., Senior Advisor, Manatt Health

Dr. Benjamin Chu M.D., has led major health systems in Houston, Southern California and New York City. As a physician and public policy advocate, Dr. Chu has chaired the Board of Directors of the Commonwealth Fund, served on the advisory committee to the director of the CDC, and sits on the National Committee for Quality Assurance. In 2015, he was elected to the National Academy of Medicine. In addition, he has served as the past chair of the American Hospital Association's Board of Trustees and on the board of The Joint Commission. He was an associate dean of two of New York's top medical schools, and held academic appointments at medical schools in New York and Houston.


Robert Rebitzer,  Managing Director, Manatt Health  

Robert Rebitzer works with the leaders of healthcare organizations on strategies to safely reduce costs and to improve the quality of care. His emphasis is on the successful implementation of business and clinical strategies, and he is recognized for the ability to engage the disparate groups needed for successful execution in healthcare—clinicians, payers, policymakers and the scientific community. Robert was a founding member of Accenture's strategy practice for the healthcare industry, as well as a senior Vice President at United Behavioral Health. In addition, he was the founding Chief Operating Officer for Standford University's Clinical Excellence Research Center and an advisor to the California Healthcare Foundation.


Alice Leiter, Vice President and Senior Counsel, eHI

Alice is a health regulatory lawyer with a specialty in health information privacy law and policy. She previously worked as a Senior Associate at the law firm Hogan Lovells, where she worked with clients on Medicare and Medicaid pricing and reimbursement. Alice spent several years as policy counsel at two different non-profit organizations, the National Partnership for Women & Families and the Center for Democracy & Technology. She currently sits on the DC HIE Policy Board, as well as the boards of Beauvoir School, Educare DC, and DC Greens, the latter of which she chairs. She received her B.A. in human biology from Stanford University and her J.D. from the Georgetown University Law Center. Alice and her husband, Michael, live in Washington, D.C. with their four children.

WEBINAR: Advancing an Effective National Privacy Framework for Health Data

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. The concerns are particularly heightened when it comes to health data.