HIMSS News

White House Releases Report on Big Data; Cites Health IT Work and Calls for HIPAA Assessments

On Thursday, May 1, 2014, the White House released Big Data: Seizing Opportunities, Preserving Values, a report led by President Obama’s Counselor John Podesta, after he was charged by the President to lead a 90-day review of big data and privacy.

According to a fact sheet released by the White House, “the review was conceived as fundamentally a scoping exercise, designed to define for the President what is new about the technologies that define the big data landscape; uncover where and how big data affects public policy and the laws and norms governing privacy; to ask how and whether big data creates new challenges for the principles animating the Consumer Privacy Bill of Rights embraced by the Administration in 2012; and to lay out an agenda for how government can maximize the benefits and minimize the risks of big data.”

The working group included Commerce Secretary Pritzker, Energy Secretary Moniz, the President's Science Advisor John Holdren, the President's Economic Advisor Jeff Zients, and other Senior Administration Officials. A blog post about the report states that the Working group met with academic researchers and privacy advocates, regulators and the technology industry, and advertisers and civil rights groups, while the President's Council of Advisors for Science and Technology conducted a parallel study of the technological trends underpinning big data.

The report cites the Blue Button Initiative and outlines several recommendations, one of which is for the government to “lead a consultative process to assess how the Health Insurance Portability and Accountability Act (HIPAA) and other relevant federal laws and regulations can best accommodate the advances in medical science and cost reductions in health care delivery enabled by big data.” That statement falls under recommendation 2, below.

The report outlined and detailed the ways that 1) Big data is saving lives, 2) Big data is making the economy work better and 3) Big data is saving taxpayer dollars. However, according to the report, “big data raises serious concerns about how we protect our privacy and other values” and big data tools can alter the balance of power between government and citizens, reveal intimate personal details and could lead to discriminatory outcomes.

A series of recommendations include:

  1. Advance the Consumer Privacy Bill of Rights because consumers deserve clear, understandable, reasonable standards for how their personal information is used in the big data era.
  2. Pass National Data Breach Legislation that provides for a single national data breach standard, along the lines of the Administration's 2011 Cybersecurity legislative proposal.
  3. Extend Privacy Protections to non-U.S. Persons because privacy is a worldwide value that should be reflected in how the federal government handles personally identifiable information from non-U.S. citizens.
  4. Ensure Data Collected on Students in School is used for Educational Purposes to drive better learning outcomes while protecting students against their data being shared or used inappropriately.
  5. Expand Technical Expertise to Stop Discrimination because the federal government should build the technical expertise to be able to identify practices and outcomes facilitated by big data analytics that have a discriminatory impact on protected classes.
  6. Amend the Electronic Communications Privacy Act to ensure the standard of protection for online, digital content is consistent with that afforded in the physical world—including by removing archaic distinctions between email left unread or over a certain age.”

 

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Keywords: 
White HouseHIPAAbig dataPrivacy