Apple and Epic: A privacy disaster? — DeSalvo introduces interoperability roadmap — We stand amended

ASHLEY GOLD | POLITICO’s Morning eHealth | 06/05/14 10:01 AM EDT

APPLE + EPIC ARE PAIRING UP TO TAKE YOUR HEALTH DATA: eHealth’s David Pittman takes a look at the Apple HealthKit announcement and what it means for patient privacy in an article coming out later today. Pretty perfect timing-we’re at the Health Privacy Summit this week, where the topic of who owns patient data and how to protect it is present in everyone’s mind. “Patient privacy watchdogs raised questions regarding privacy and data collection with health apps in Apple’s new operating system, worrying it could usher in a new era of trampled privacy rights…Privacy laws that govern what doctors and hospitals can and cannot do with patient information don’t apply to mobile health apps, meaning they are largely free to sell and disseminate the information collected.” Stay tuned for the full story coming this morning for Pros.

DOES DESALVO KNOW THE WAY…TO INTEROPERABILITY? The Office of the National Coordinator for Health IT is preparing a vision paper on how it hopes to achieve the interoperability of electronic health records, the office’s head, Karen DeSalvo, said Wednesday at the Health Privacy Summit. In addition to outlining ONC’s thoughts, the paper “will be an invitation to folks to come to the table to talk through how we can get there,” DeSalvo said. An ONC spokeswoman said ONC hopes to release the paper later this week.

THIS MORNING, I’m headed to Georgetown Law Center to catch some more of the Health Privacy Summit, which @David_Pittman checked out Wednesday. I’m interested in the privacy debate “That Individuals Should Maintain Their Own Health Data” between the chief privacy officer of IMS Health and a senior associate at Consumer Action. Are people too disengaged or lazy to own their own health data? We shall see.

To view the full article, please visit Apple and Epic: A privacy disaster? — DeSalvo introduces interoperability roadmap — We stand amended

Anita Allen receives Lifetime Achievement Award from privacy advocacy group EPIC

May 29, 2014
Anita Allen, the Vice Provost for Faculty at Penn and the Law School’s Henry R. Silverman Professor of Law and Professor of Philosophy, will receive the Electronic Privacy Information Center’s (EPIC) Lifetime Achievement Award at a ceremony in Washington, D.C. June 2.
Allen, described by EPIC as “the nation’s leading privacy scholar,” has written and lectured widely on privacy law and ethics; her books on the subject include Unpopular Privacy:  What Must We Hide(Oxford, 2011); Privacy Law and Society (West 2011); and Why Privacy Isn’t Everything: Feminist Reflections on Personal Accountability (2003). Her book Uneasy Access: Privacy for Women in a Free Society (1988) was the first by an American philosopher devoted to how we define and value privacy. Allen is also the author The New Ethics: A Guide to the 21st Century Moral Landscape (2004).
EPIC is an independent non-profit research center based in Washington, D.C. focusing on privacy, freedom of expression, democratic values, and pursues a wide range of program activities including public education, litigation, and advocacy concerning the future of the Internet, according to the group’s website. The organization regularly files amicus briefs in federal courts, champions open government and consumer privacy, and lobbies Congress about privacy and civil liberties issues.  
Since 2010, Allen has served as a Commissioner on President Barack Obama’s Presidential Commission for the Study of Bioethical Issues. She holds a Ph.D. in Philosophy from the University of Michigan and a law degree from Harvard, and has published more than 100 scholarly articles and essays on topics that include health privacy, women privacy, children’s privacy, LGBT-related privacy rights, and electronic data protection. Allen has lectured on privacy throughout North America and Europe, and Taiwan, Japan and Israel. 
Allen has served on the boards of local and national non-profits including the Bazelon Center for Mental Health Law, the Maternity Care Coalition, the Hastings Center, the West Philadelphia Alliance for Children, and Planned Parenthood of Metropolitan Washington. A former board member of EPIC, she has played a leading role in the modern understanding of the right to privacy.

 

Petition for OSTP to Conduct Public Comment Process on Big Data and the Future of Privacy

February 10, 2013

Patient Privacy Rights, joined by EPIC, ACLU, Center for Democracy & Technology, EFF and 24 other consumer privacy and public interest organizations asked the White House’s Office of Science and Technology Policy to issue a Request for Information in order to conduct a review that incorporates the concerns and opinions of those whose data may be collected in bulk as a result of their engagement with technology.

“We believe that the public policy considerations arising from big data and privacy are issues of national concerns that ‘require the attention at the highest levels of Government.’”

The Coalition for Patient Privacy believes that the “OSTP should consider a broad range of big data privacy issues, including but not limited to:
(1) What potential harms arise from big data collection and how are these risks currently addressed?
(2) What are the legal frameworks currently governing big data, and are they adequate?
(3) How could companies and government agencies be more transparent in the use of big data, for example, by publishing algorithms?
(4) What technical measures could promote the benefits of big data while minimizing the privacy risks?
(5) What experience have other countries had trying to address the challenges of big data?
(6) What future trends concerning big data could inform the current debate?”

For more information, see EPIC, Coalition Urge White House to Listen to Public on “Big Data and Privacy”

To view a copy of the letter, please visit Petition for OSTP to Conduct Public Comment Process on Big Data and the Future of Privacy

Five Public Interest Groups Underscore Opposition To Settlement In Google Privacy Suit

“Consumer Watchdog joined the Electronic Privacy Information Center (EPIC) and three other public interest groups today in re-iterating their opposition to a proposed $8.5 million settlement in a class action suit against Google for privacy violations in the way it handled users’ search data because proposed recipients of settlement funds don’t represent the interests of the class.”

Read more: http://www.digitaljournal.com/pr/1529279#ixzz2i1kPTbJt

Panel: Big data’s role in healthcare remains unclear

Big data is an enigma when it comes to healthcare, as described by a panel on Wednesday at the third annual Health Privacy Summit in Washington, D.C., hosted by Patient Privacy Rights. On one hand, according to Deloitte principal Deborah Golden, there are infinite positive possibilities for big data use, such as improving patient safety via openly available medication information.

On the other hand, according to Harvard professor Latanya Sweeney, big data also represents big privacy issues.

“A lot of our problems come from giving data away,” Sweeney said.

Much of the conversation focused on those problems, particularly as they related to data being used without patient consent–or knowledge that they gave consent.

“In the U.S., we tend to take a sector-specific approach to privacy regulation,” David Jacobs, an attorney with the Electronic Privacy Information Center, said. “We’re nowhere near where we should be as far as consumer access to their own medical information to find out where it does and to exercise control over it.”

Living Online: Privacy and Security Issues in a Digital Age

Our lives are increasingly lived online. A large number of Americans routinely exchange information in cyberspace for personal, business, and other purposes. What privacy and security issues present themselves in this relatively new and increasingly ubiquitous space? What particular privacy concerns might apply when specific entities, such as the government, hold or process our information? What particular considerations might apply when the information being transmitted is particularly sensitive, such as health care information or financial information? How do privacy, security, and information ownership concerns function when information is being exchanged on social networking sites?

The November 3, 2009 event featured a lunchtime keynote address by Christopher N. Olsen, the Assistant Director in the Division of Privacy and Identity Protection at the Federal Trade Commission.

A panel discussion was held from 1 – 2:30 pm and featured:

  • Moderator, Jeffrey Rosen, Professor of Law at George Washington University and Legal Affairs Editor for The New Republic
  • Deborah C. Peel, MD, Founder and Chair, Patient Privacy Rights; Chair, Coalition for Patient Privacy
  • Lillie Coney, Associate Director, Electronic Privacy Information Center; Coordinator, Privacy Coalition
  • Alan Davidson, Director of Public Policy, Google

Here is the Video of the Panel:

Tuesday, November 3, 2009
11:30 am – 2:30 pm
Center for American Progress
1333 H. Street NW, 10th Floor
Washington, DC 20005