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.

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?

Speakers: 

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.

Frequent eHI collaborator Manatt Phelps & Phillips released yesterday a white paper titled A Shared Responsibility: Protecting Consumer Health Data Privacy in an Increasingly Connected World. Developed by Manatt Health, the firm’s healthcare legal and consulting group, with the support of the Robert Wood Johnson Foundation (RWJF), the paper examines 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.

The eHealth Initiative Foundation (eHI) and the Center for Democracy & Technology (CDT) are currently collaborating on a separate but related project, Building a Consumer Privacy Framework for Health Data  that builds on the Manatt work and is also supported by RWJF.  Guided by a Steering Committee made up of experts and leaders from healthcare, technology, and consumer advocacy groups, the project’s goal is to address and shore up protections for the increasingly vast amount of health data that falls outside the scope of HIPAA.  

The Steering Committee will incorporate insights and analyses from the Manatt white paper in its work to identify preferred pathways and actionable steps to create additional consumer health privacy protections. This work includes the development of a standard set of data protections that companies would adopt in order to show their commitment to acting responsibly with respect to their users’ data, as well as a proposed structure for this new privacy framework.

Although the country is beginning to reopen, the COVID-19 virus remains a very real threat, and it continues to have a significant impact on all aspects of the healthcare system. In the wake of the coronavirus outbreak, the Department of Health and Human Services acted swiftly to make a number of changes to federal privacy protections, as well as issuing updates and guidance, in order to improve the nation’s ability to share information to provide safe and effective care.

Although most of the changes are specific to the crisis and thus not intended to be permanent, there are no explicit expiration dates, and many have argued that some of the adjustments – particularly that related to telehealth – should remain in place even after the virus has been contained.

Below we summarize these changes to the privacy protections for health data and provide links to additional resources.

The two workgroups for our ‘Building a Consumer Privacy Framework for Health Data’ project, funded by the Robert Wood Johnson Foundation and co-led by the Center for Democracy and Technology, met for the third time in May.  The workgroups are tasked with developing the content, scope and structure of a framework for unregulated health information.

The two workgroups for our ‘Building a Consumer Privacy Framework for Health Data’ project, funded by the Robert Wood Johnson Foundation and co-led by the Center for Democracy and Technology, met for the third time in May.  The workgroups are tasked with developing the content, scope and structure of a framework for unregulated health information.