WASHINGTON (Reuters) - Current government rules do too little to protect the privacy of people’s personal health information and also hinder the use of health data in medical research, a panel of experts reported on Wednesday.
A committee of the Institute of Medicine, which provides advice to U.S. policymakers, urged Congress to take an entirely new approach to protecting personal health data in research.
Federal standards for protecting privacy of personal health data under the Health Insurance Portability and Accountability Act of 1996, or HIPAA, are not doing the job, the panel said.
Congress and the Obama administration are planning major changes this year to the U.S. health care system. Regarding the privacy rules, Congress should either start from scratch or thoroughly overall HIPAA’s privacy provisions, the panel said.
Better data security is needed, with greater use of encryption and other security techniques, the panel said. Encryption should be required for laptops, flash drives and other devices containing such data, it said.
“Both privacy and health research are important. And we feel that we can strengthen privacy protections for people who participate in research while also allowing important research to proceed without unnecessary impediments,” Dr. Bernard Lo of the University of California San Francisco, a member of the panel, told reporters.
HIPAA governs how personally identifiable health information can be used and disclosed by health plans, health care providers and others. The intention is to protect personal health information while permitting the flow of information for health-related research and medical care.
Lo said HIPAA has burdensome and confusing procedures for people to consent to have their health data used in medical research, dissuading people from taking part in such research.
The panel cited heart and stroke research that was abandoned because of problems getting access to health data.
Editing by Maggie Fox and David Wiessler
Our Standards: The Thomson Reuters Trust Principles.