Some U.S. states are reviewing their policies around the collection and sale of health information to ensure that some patients can't be identified in publicly available databases of hospital records.
Washington suspended distribution of the information and developed a confidentiality agreement that all buyers must now sign, according to Donn Moyer, a spokesman for the state’s Department of Health. Bloomberg News, working with Harvard University professor Latanya Sweeney, reported on June 4 that some patients of Washington hospitals could be identified by name and have their conditions and procedures exposed when a database sold by the state for $50 is combined with news articles and other public information.
Washington, Tennessee, Nevada and Arizona have begun privacy audits as a result of the report, according to inquiries made with health agencies by Bloomberg. California, Illinois, New Jersey, Massachusetts, Connecticut, Nebraska and Alaska already have reviews of their health data collection policies under way, they said.
For decades, state public-health agencies have collected patient information from hospitals and resold it to researchers and commercial data-mining firms. The records are stripped of identifiers such as name, address and date of birth. However, they may contain less-obvious identifiers such as postal code, age and admission and discharge dates, which can be used to reveal patient identities, or “re-identify” them.
States can legally release such details because the agencies are exempt from the Health Insurance Portability and Accountability Act, the 1996 law that sets federal standards for medical privacy. Organizations that are covered by HIPAA including health care providers, insurers and their business partners are forbidden from disclosing such information.
The state probes are focused on whether privacy standards for health information should be tightened as data-mining technologies get more sophisticated and U.S. President Barack Obama’s health-care overhaul drives rapid growth in the amount of patient data being generated and shared.
The implementation of electronic health records and state health information exchanges are helping fuel a boom in the market for health-information technology, which will surpass $102 billion in worldwide sales in 2014, according to Gartner Inc.
“In all the years I’ve worked in this field I never heard of re-identification using limited data and publicly available information,” said Joseph Greenway, the director of Center for Health Information Analysis at the University of Nevada Las Vegas, which handles the state’s sale of hospital records.
Nevada is interviewing buyers more closely about their intended use of the data and is now less likely to approve requests involving sensitive information, he said.
At least 26 states sell hospital records that contain some identifying markers, according to records reviewed by Bloomberg News and Sweeney, director of Harvard’s Data Privacy Lab and creator of theDataMap.org, a project to identify companies collecting health information. Bloomberg News contacted state health agencies and hospital associations in each of the 50 states about the sale of hospital records.
Of the states, 18 said they hadn’t made policy changes and weren’t reviewing their practices. Three said they don’t collect or sell hospital data. The rest didn’t reply.
Rachel Seeger, a spokeswoman for the Office for Civil Rights at the U.S. Department of Health and Human Services, which investigates HIPAA violations, declined to comment.
There’s often friction between providers of health information and buyers in a medical-data industry that McKinsey & Co. projects will surpass $10 billion by 2020. The data’s usefulness increases as more patient details are included.
Companies that benefit from buying states’ hospital records include IMS Health Inc., the provider of prescription data that was taken private by TPG Capital and Canada Pension Plan Investment Board for $5.06 billion in 2010. Other buyers are OptumInsight, a division of UnitedHealth Group Inc., the biggest U.S. health insurer, and WebMD Health Corp., which supplements its consumer website with advisory services for companies and insurers.
Sweeney’s goal of identifying patients is to show that threats to privacy exist in datasets that are widely distributed and fall outside HIPAA’s regulations. She exposed flaws in the system in 1997 by finding the medical records of former Massachusetts Governor William Weld in a redacted dataset, which served as a catalyst for tighter rules.
“It’s been a great response,” Sweeney said. “The fact that more than one state has actually responded and sought us out to talk about the vulnerabilities in their data is very exciting. The goal here is not to stop data sharing. It’s to make it smarter.”