Existing efforts to ensure the privacy of patient health information may be inadequate in the era of big data, according to a newly published White House report.
The 85-page report "Big Data: Seizing Opportunities, Preserving Values" is the result of a 90-day review of big data and privacy ordered by President Obama in January. It includes public input, as well as that from academic researchers, privacy advocates, regulators, the technology industry and others, a fact sheet explains.
It calls predictive medicine the ultimate application of big data in health, noting its potential to prevent disease or tackle it early based on a person's health status and genetic information. The report also says that big data has the potential to affect future generations and to extrapolate risk to others, singly or as groups.
"Using big data to improve health requires advanced analytical models to ingest multiple kinds of lifestyle, genomic, medical, and financial data," the report says. "The complexity of complying with numerous laws when data is combined from various sources raises the potential need to carve out special data-use authorities for the healthcare industry if it is to realize the potential health gains and cost reductions that could come from big data analytics."
Protections beyond those offered by HIPAA and the Genetic Information Non-Discrimination Act may be needed, as well as streamlining data interoperability and compliance requirements, it adds.
The President's Council of Advisors on Science & Technology is calling for universal standards and an architecture to facilitate controlled access to information across many different types of records.
"Modernizing the healthcare data privacy framework will require careful negotiation between the many parties involved in delivering healthcare and insurance to Americans, but the potential economic and health benefits make it well worth the effort," the report states.
Its recommendations include:
- Advancing the Consumer Privacy Bill of Rights, which calls for individual control of personal data, transparency about how data is used and security. The Government Accountability Office in November called on Congress to update that framework to take technology into account.
- Passing legislation setting a single data breach standard
- Expanding technical expertise to stop discrimination. Health information is especially vulnerable to the kinds of subtle discrimination that can result from big data analysis, a Microsoft researcher and MIT visiting professor has warned.
- Amending the Electronic Communications Privacy Act to ensure its protections for electronic communications equal that of the paper world.
As more data is collected, stored and used, the report advocates a framework for responsible use of data, noting information intended for one use could cause harm when used for a different purpose.