The Health Record Network Foundation (HRN) has started a number of pilot programs to create a market for automated online health information. The goal is to create a voluntary online medical record system where patients can enter their medical history and allow access for their physicians or other medical providers. HRN's first three pilot programs are with the Duke University School of Medicine (North Carolina), the state of Wyoming, and the Sunnybrook and Women's College Health Sciences Centre in Toronto, Ontario. Brian Baum, CEO of HRN, says, "This idea means the consumer can start the process. They can go online anywhere, anytime, and initiate the creation of a personal health record, storing things like a family health history, medication list, allergies, who their clinical care team is—just basic information that's within their control."
HRN's hope is that the ease and accessibility of online health records will spread, creating a consumer demand for the sort of portability and efficiency it provides. "We've set up the Health Record Network as a not-for-profit organization," says Baum. "The intent is to create a nationally branded utility in healthcare." He compares it to the Federal Deposit Insurance Corporation (FDIC), which provides security insurance for member banks. "We're saying," says Baum, "that same level of identity and awareness needs to exist. You walk up to a doctor's office, to a clinic, to a hospital, or to a dentist, and you would see the HRN logo. That's what we're driving toward, that kind of ubiquity. So when you walk up to that office, that logo means this facility, this individual, participates in safe, secure, automated health information."
HRN is not the only organization moving in this direction. The Bush Administration has created the Office of the National Coordinator for Health Information Technology (ONCHIT) in the Department of Health & Human Services (HHS) to organize a standardized, electronic medical record. The plan calls for $4 billion to be spent over ten years. In addition, in the last congressional term, Congressman Patrick Kennedy (D-Rhode Island) introduced the Josie King Act, which would create a series of interconnected regional health information networks resulting in a fully electronic health record by 2015. The bill expired at the end of the last Congress, but is expected to be reintroduced in April 2005. Michael Zamore, Healthcare Policy Advisor for Congressman Kennedy, says, "We're looking at addressing the challenges of building the infrastructure, how the information will be shared, how to get the technology into physicians' hands, and how to make sure you're harnessing that technology to improve quality and efficiency and patient safety."
Baum's plan is for the Health Record Network to pay for itself. "One of the choices the consumer could have would be to participate or not participate in an identified health information database." The health data would then be sold to pharmaceutical companies and scientists to be used in research. The user's identification—name, social security number, and other identifying information—would not be included. "All those statistics could be made available in this database," says Baum. "That has enormous market value from a research perspective, being able to look at disease patterns, being able to identify drug-drug interactions very early on, to be able to study new drug therapies in much smaller clinical populations. It opens up whole new opportunities to really accelerate research and development in healthcare."
Privacy advocates have a number of concerns over online health records. Kirk Nahra, an attorney with the Washington, D.C. law firm Wiley, Rein & Fielding, says, "I think it is a fundamental question of privacy and security on the one hand, and other benefits on the other hand like potential cost savings and improved quality of healthcare."
Nahra notes that consumers need to be fully aware of what they're agreeing to if their health information is to be used in this fashion. "The more this information floats around to different people, every link in the chain becomes its own security risk. When you start having little bits and pieces of information, you can add them up and figure out who people are." In addition, Nahra says, "No security is perfect. People have to understand that you can always make security better but it's never going to be perfect."
"What we're talking about," says Baum, "is fundamentally changing culture. If you think about it, this will ultimately change the way physicians practice medicine. It's going to change the way consumers approach healthcare because ultimately they're going to have to take on more responsibility."
Nahra agrees, but cautions, "I think the real question is just the tradeoffs, and whether people will understand the tradeoffs and recognize what's going on, and whether the tradeoffs will work and make sense."