Personally Controlled Health Records: Are They the Next Big Thing?

In the mid-1990s, at the dawn of the internet revolution, a small band of researchers hatched a plan to put health care directly into the hands of patients. According to their vision, people would turn on their computers and have access to a virtual caretaker—a set of software programs that would collect and store all their health records in a central place. The system, aptly called Guardian Angel, would follow a patient from doctor to doctor, interpret medical symptoms and lab results, manage treatment, and even offer medical advice. Researchers Isaac Kohane and Kenneth Mandl, along with MIT’s Peter Szolovits, wrote grant after grant to get the project funded.

Photo by Joon Lee

Organizers of the conference on personally controlled medical records were (from left) Ben Reis, Isaac Kohane, William Crawford, Ken Mandl, Elissa Weitzman, Keith Strier, and Patrick Taylor.

“We were told either it’s unachievable or it’s already been done,” said Kohane, the Lawrence J. Henderson associate professor of pediatrics and health sciences and technology. Nearly 10 years later, a stripped down, more muscular concept, one that focuses primarily on the collection and control by patients of their own medical records, is catching the attention of people in health care, business, and government. Last year, George W. Bush called for the establishment of patient-controlled health records by 2014. Judging by the roster of participants at a recent meeting—organized by Mandl, HMS assistant professor of pediatrics at Children’s Hospital Boston; Kohane, who is also the director of Countway Library; William Crawford, of the Centers for Medicare and Medicaid Services; and colleagues—the push to create personally controlled health records may be on the brink of going public in the same way that personal computers and the internet did.

In fact, the momentum is so great that the effort could be at risk of fragmenting, with companies and institutions producing a dizzying array of personally controlled health records. “The danger is that they each create their own system and every American now has the opportunity to have 17 personally controlled records rather than one,” said Mandl. A main goal of the conference organizers and committee members, which included Elissa Weitzman, Ben Reis, and Patrick Taylor, all of Children’s, and others, was to turn the potentially divisive field into a collaborative enterprise.

Gathering Interest
There was a feeling of liveliness and collegiality as representatives from an extraordinary array of organizations—including government institutions such as the Centers for Disease Control and Prevention (CDC), and the National Institutes of Health; health care information technology companies such as TriZetto, Cerner, and Deloitte; internet and computer giants like Google, Microsoft, and Intel; Wal-Mart and other businesses; and hospitals, universities, philanthropies, and venture capital companies—met and mingled in Countway Library on Oct. 10 and 11. In plenary and break-out sessions focusing on technological, business, and societal aspects, participants discussed questions such as What will a personally controlled health record look like? How will it work? Who will pay? Will people use them and to what end?

Driving the discussions were two pressing realities—the decline in health care in America and rising costs. “We are with Belarus and Latvia in terms of health,” said Bradley Perkins of the CDC. And patient demand for new tests, procedures, and drugs is ratcheting up health care costs. As the population becomes older, more overweight and overworked, the bill will be even higher for government and employers.

“We have a lot of alphas working at our company, under lots of stress. They are walking time bombs,” said Omid Moghadam of Intel. “By 2015 we could be facing a billion-dollar bill.”

Hospitals such as Beth Israel Deaconess and Children’s already have central electronic health records, allowing patients to view test results, diagnoses, medications, and other records. The Veterans Administration offers its patients an online health management tool, My HealtheVet. What distinguishes the new vision is the idea that records would move between institutions and be controlled by the patient, rather than the hospital or clinic. There will be technical challenges in pulling that off. Currently there are 700 standards for representing medical data. The real task is to agree on which ones to use, said John Halamka, chief information officer at HMS.

In Search of a Need
Many believed business and social concerns would be even thornier, such as who will pay and will patients and providers actually use the new system. Participants in the business break-out session worked on the assumption that patients would pay, while those in the societal meeting said it would have to be free. In both cases, incentives would have to be clear. “Personally controlled health records will succeed when they resolve that fundamental unmet need,” said Keith Strier of Deloitte Consulting, part of the organizing committee. “We have to figure out what that unmet need is.”

Photo by Joon Lee In his talk, Lotus founder Mitch Kapor drew lessons from the rise of the personal computer and the internet to illustrate the potential impact of electronic medical records.

An obvious one is reduced costs—achieved through fewer unnecessarily repeated tests, fewer prescribing errors, greater patient compliance, and possibly better diagnoses and treatment. Another is the promise of better health. A telling question was raised by Weitzman, faculty scientist at Children’s and at HSPH, who discussed the criteria by which the personally controlled health record movement will ultimately be judged. “A question we will have to address is Are people healthier? And are these gains in health equitable?” she said.

Among physicians there may be obstacles to universal adoption. A study in the Oct. 11 online Health Affairs by David Blumenthal, the Samuel O. Thier professor of medicine at Massachusetts General Hospital, and colleagues showed that while 24 percent of providers use electronic health records, only 10 percent are using a fully operational system. For patients, there is the issue of trust that their medical data will remain private. Once these concerns are addressed, Kohane and Mandl believe that patients may become the main drivers of the personally controlled health record movement.

“Individuals are having to care for their own health and curate their own information in ways that they’ve never had to face before,” said Mandl. The burden may become especially great for people with ailing elderly parents. They may be the early adopters of such a system along with parents of young disease-prone children. The problem is bound to become more complex as patients routinely undergo genetic testing.

Once set in place, personally controlled health records could open the door to a flood of business enterprises, such as diagnostic and monitoring services. “Nobody expected the personal computer,” said Mitch Kapor, developer of the blockbuster business application Lotus 1-2-3, in his keynote speech. “It represented a fundamental shift of power from people inside the computing industry to entrepreneurial outsiders like myself who had no cache.” The rise of the internet was also an unexpected phenomenon, he said. Like the personal computer, it succeeded because it was built on democratic principles—openness, interoperability, and decentralization. “If you give patients control of their data, it will be very empowering to them as individuals and also to the aggregate,” he said. “Build it and they will come.”

—Misia Landau

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