Patient data available to many, report says
State information-collection systems are storing patient information in massive databases but often without patients' consent, according to a report from a consumer advocacy group.
Citizens' Council for Health Freedom (CCHF) says federal funding has allowed an array of collection systems to be created under the banner of "public health" and fall outside the protections that most people assume HIPAA covers, according to an executive summary. The report details information stored state by state, but is based on data state health departments sent in during a CCHF study from 2005-2006.
The report, “Patient Privacy and Public Trust: How Health Surveillance Systems Are Undermining Both,” includes details about all of the private patient data that states collect and maintain. "What we found is a scary, disturbing intrusion into Americans’ privacy, and a violation of our Fourth Amendment rights, which protect us from unreasonable searches and seizures without probable cause—and that applies to our private medical information, too,” said CCHF co-founder Twila Brase, in a release.
The report also says that as a part of the federal funding requirement, state agencies overseeing these systems share patient health information with various federal agencies, including the Centers for Disease Control and Prevention and the Department of Health and Human Services. Patient consent for collection and use of their data is typically not required, although dissent is sometimes permitted. Government workers can enter hospitals and clinics to collect patient data without consent.
CCHF says that HIPAA and the HITECH Act together allow more than 2.2 million entities to access patient medical data without patient consent. The report calls this data-gathering a "significant intrusion" by the government and a threat to public trust.
The group is urging people to press for legislation making "opt in" requirements the default for participation in public health tracking, rather than "opt out."
Access the full report here.
Editor
Editor Beth earned a bachelor’s degree in journalism and master’s in health communication. She has worked in hospital, academic and publishing settings over the past 20 years. Beth joined TriMed in 2005, as editor of CMIO and Clinical Innovation + Technology. When not covering all things related to health IT, she spends time with her husband and three children.