Hoping to provide the backbone for a grand plan to put the nation's medical records online, federal officials have been quietly retooling an obscure government data-sharing service into a robust new Health Internet.
The concept has drawn intense interest from technology firms, including Microsoft and Google, which are scrambling to find new--and profitable--uses for digital medical records and the cyber health-care services they are starting to spawn.
Aneesh Chopra, President Obama's chief technology officer, and Todd Park, who holds a similar position with the U.S. Department of Health and Human Services, previewed the plan late last month to an enthusiastic audience of health information technology professionals in Boston.
The administration hopes the Health Internet could be in operation by early next year and that its technological infrastructure will encourage millions of people to more readily exchange their medical records with doctors and hospitals online. Technical barriers and concerns about privacy have so far kept most people's health data in closed networks or paper files.
"This could catch on quite quickly," said Robert M. Kolodner, a psychiatrist and former federal health information technology chief who helped develop the network for government agencies. "Those who are skeptical can wait until they're more comfortable," the psychiatrist said.
President Obama has set a goal of creating a digital record for every American by 2014. The government is preparing to invest as much as $45 billion in stimulus funds over the next ten years to help doctors and hospitals defray the cost of buying electronic records systems.
Chopra said in an interview that the positive response from policy experts and technology companies to forging the system into a consumer-oriented network "is the right one." He said he was "excited about the possibilities for a really robust network."
Like the Internet itself, the existing health data-sharing service -- called the National Health Information Network -- was created for government use, in this case to allow doctors to exchange medical information from veterans' and military hospitals as well as for speeding up processing of Social Security disability claims. Though it's never been tested for wide public use, officials expect to quickly retool it to do so.
The system relies on open-source software called CONNECT, which was developed by more than 20 federal agencies to share health information. Officials have spent millions of dollars on the system, but expect to adapt it for public use at little additional cost.
It remains unclear how the public will react to the idea of personal health data circulating widely in cyberspace. The push to transact medical business online raises a plethora of touchy privacy and security concerns as it shifts--at least ostensibly-- custody and control over health records from the offices of health professionals to consumers.
"The privacy issues are massive and the American public hasn't been informed about them," said Deborah C. Peel, a Texas psychiatrist and founder of Patient Privacy Rights.
Deven McGraw, a privacy expert at the Center for Democracy and Technology in Washington, said she worries that private medical data could be bought and sold without restriction, for purposes ranging from hawking new medicines to denying someone a job based on their health status.
"We don't have a rule that says, 'Thou shalt not use personal information for marketing purposes without someone's permission,''' said McGraw, who sits on a committee that advises the government on health information technology. "We've got to pay closer attention to that."
Yet some experiments around the country show that in the right circumstances many people are ready for cyber health services. Given the choice for the first time this year, thousands of University of Indiana freshmen agreed to store their medical records in digital files they can keep and update for the rest of their lives, for instance.
About four in ten new students plugged into the electronic network prior to arriving at the Bloomington campus. Many now rely on it for tasks ranging from booking clinic visits to sending test results to hometown doctors, according to Jeff Donnell, a vice-president at Medical Informatics Engineering. The Indiana firm supplied its NoMoreClipboard.com software to the university.
"These kids are pretty tech-savvy and they expect to conduct business online," said Donnell. He said the system also is a hit with "helicopter parents very involved in their sons and daughters' lives."
Pete Grogg, associate director at the Indiana University health center, agrees that privacy concerns might make personal health records a hard sell for middle-aged people. But he predicted that giving people control over their health histories during their college years would pay dividends later in life. The university already is thinking about expanding the digital records network to graduates and sees the Health Internet as a major gateway to speed that process.
"We're giving them the tools now to help them understand their health and how their behaviors impact that in the long term," said Grogg.
Mitchell Kapor, who as founder of Lotus Development Corp. was a pioneer of personal computing, said the excitement in high-tech circles over the online health network harkens to the 1990s, when government officials and entrepreneurs began to transform the Internet from an obscure military and scientific platform into today's crowded information superhighway.
Kapor predicts quick acceptance of the Health Internet from all age groups. While privacy concerns exist, he said, security will tighten up just as it did for other online commerce. "I can remember in the early '90s ... a large sector said, 'I am never going to put my credit card on the Internet,'" said Kapor. The Health Internet offers "a huge business opportunity " that "could be amazing in impact," he said.
At a September conference hosted by Children's Hospital Boston and Harvard Medical School, federal officials said they would move quickly to invite the public onto the new network. The meeting was attended by many top people in the health technology and business communities, who plan to assist government in making the system inviting and easy for consumers.
"I think this is a big deal," said John Moore, a health information technology blogger who reported on the meeting earlier this month. He said starting with just military personnel and their families could bring in more than 8 million people, and the number of users could quickly multiply.
Microsoft, which makes personal health records software called Health Vault, agrees. Google has a similar free product called Google Health. Both firms in recent months have announced partnerships with online health care ventures ranging from pharmacy services to companies that deliver medical care by videoconference.
Earlier this month, Google announced a deal with Florida-based MDLiveCare, which offers doctor consultations by video, phone or email. The company charges a monthly membership fee and $35 for a doctor consultation, according to its Web site. Patients can use Google Health to send their records back and forth to these doctors and other health-care providers. Microsoft has a similar arrangement with a company called AmericanWell.
Sean Nolan, chief architect and general manager of Microsoft's Health Solutions Group, said the Health Internet offers a "really great opportunity" for consumers to assume more responsibility for their health.
"The vision is of everybody in the nation and the world being able to manage their own health care," he said.
Microsoft expects this digital revolution to both improve the quality of medical care and "make it a ton more efficient. Both can happen at the same time," Nolan said. As an example, he said that massive amounts of data collected from patients can help health officials spot adverse drug reactions more quickly, thus saving lives.
He acknowledged that personal health record firms might sell patient data to drug companies and other health researchers, but said that Microsoft would never do so without the patient's consent. A Microsoft fact sheet on HealthVault says: "We do not use your health information for commercial purposes unless we ask and you clearly tell us we may."
Yet even the most exuberant tech people see speed bumps that could slow down traffic.
Roni Zeiger, a physician who is product manager for Google Health, wrote in a blog post in June that people still face "practical challenges" in trying to gain access to their health records.
"For example, getting access to your medical records today often requires that you fill out a form at your doctor's office, pay a $35 copying fee, and then wait a month or more to receive your records in the mail. Under the law, this is your data, and we believe you should have it the day you visit your doctor," Zeiger wrote. He declined to be interviewed about the Health Internet.
If consumers get control of their health data, one unresolved question is whether they should be able to alter an electronic record in their custody to wipe out potentially embarrassing details.
Editing one's medical records will prove to be a "very controversial area," said Kapor. But he said that privacy issues "are more tractable than worst pessimists think." For instance, he said, doctors' findings could be written much like an original blog posting to which the patient could add comments, but not change.
Donnell, the Indiana software executive, expects many concerns to melt away as electronic record-keeping catches on with doctors and hospitals.
"It always seemed silly that I as a patient have to go to doctor's office and essentially beg them to print me out a copy and pay a fee to get that," he said. "It's my health and my health information."
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