The Mayo Clinic is joining forces with Microsoft’s HealthVault technology to offer the Mayo Clinic Health Center to the public as a market-based online tool allowing people to keep track of their health records, family history, and chronic conditions.
The product from the renowned medical institution joins a growing list of online health record systems, such as Google Health and Revolution Health, which enable people to track and manage immunizations, high blood pressure, diabetes, asthma, and other personal health matters.
With online health records becoming increasingly popular, Senate Commerce, Science, and Transportation Committee Chairman Jay Rockefeller (D-WV) introduced in April a bill to subsidize the nationwide use of electronic health records, especially in small, rural communities.
Wary of Government Intrusion
Rockefeller’s bill, the Health Information Technology Public Utility Act of 2009 (S 890), would mandate the nationwide use of electronic health records by building on the federal Veterans Health Information Systems and Technology Architecture (VistA), which is currently experimenting with “open-source” electronic health records.
Daniel Ballon, a senior technology fellow for the San Francisco-based Pacific Research Institute, says that’s the wrong way for government to approach online health records.
“Rather than wait for market forces to determine whether or how to digitize health records, the government has grown impatient,” Ballon said. “Unfortunately, this puts bureaucrats in a position to pick winners and losers in the marketplace, and potentially forces fundamentally flawed technologies on an unwilling public.
“If the government creates a federal repository for health records, it also takes control away from consumers and chills innovation in the market for personal health records,” Ballon added.
A Competing View
Daniel Castro, a senior analyst with the Washington, DC-based Information Technology and Innovation Foundation, says the government is right to encourage the use of online health record systems. He says doing so will increase the quality of care and streamline it, especially for low-income patients who may not have a designated health care provider.
Castro said Rockefeller’s proposal would help keep the costs down for providers who are starting an online health record system for their patients.
“Services like Microsoft HealthVault or Google Health provide useful tools for patients to monitor and track their own health,” Castro said. “These tools help empower patients and allow them to take more responsibility for their own medical care. But a major problem right now is that most patients do not have doctors who store their medical data in an electronic, interoperable format.”
“Rockefeller’s legislation addresses a critical need—providing low-cost, interoperable electronic health record systems to safety-net providers,” Castro added. “But it is not clear that using the VistA system in these hospitals is the best use of federal funds.
“The VistA EHR system is open-source, so there is no cost for the software, but providers would still be responsible for the hardware and installation and operation costs,” Castro said. “No study has shown VistA has a lower total cost of ownership than a competing private-sector solution.”
Beyond how much a publicly funded EHR system may cost or how effectively it will work, Ballon thinks a larger problem may arise with keeping the data secure if there is little to no financial incentive to keep the public’s health records safe from hackers.
“While electronic health records can in principle decrease costs and increase quality of health care, there has been surprisingly little discussion about the greater public costs of a government-run approach,” said Ballon. “Essentially, we would create a vast database of every American’s most sensitive personal information, which individuals will have little power to change or control and which the government can access at the push of a button.
“I received an e-mail recently from the University of California notifying me that electronic health information from 160,000 people, including myself, had been breached,” Ballon added. “Unlike with sensitive financial information, a patient cannot remedy such a breach by applying for a new genome or filing for a change of family medical history. Because the government has little financial incentive to keep personal information secure, experience shows that major data breaches are inevitable.”
Need for Strict Guidelines
If the government becomes increasingly involved in online health record-keeping, strict guidelines about how the data could be used will be essential, Ballon says. Otherwise, questions about what the government will do with the information will continue to arise.
“Such a national approach also raises the possibility that system abuses could endanger civil liberties,” Ballon warned. “What if the government decides to treat these records as a national DNA database? This could result in law enforcement raiding the information of innocent citizens, without any need for a warrant.
“What if the Defense Advanced Research Projects Agency develops a genetic profile for potential terrorists, and the NSA mines the national electronic health database for wiretap targets?” Ballon asked. “What if certain genetic characteristics make people more susceptible to a flu pandemic, and the Centers for Disease Control and Prevention mines the database to preemptively quarantine millions of healthy Americans?
“Unlike Microsoft’s and Google’s solutions that put consumers in control of their information, a national approach takes information away from citizens and gives them no power to control where it goes and how it is used,” Ballon continued. “This is not a decision that we, as a nation, should take lightly.”
Aricka Flowers ([email protected]) writes from Chicago.