Consumer control over personal medical data is coming to Canada

Technology that claims to put consumers instead of institutions in control of their own healthcare information is coming. But with it comes new privacy and security worries.

Beta versions of Google Health and Microsoft HealthVault – both examples of new personal health record (PHR) technology – were launched last year. These free software products allow consumers to store and manage their personal medical data in structured repositories online.

The technology addresses an emerging need, says Grad Conn, Redmond-based director of the health solutions group at Microsoft. “There are silos of information about you or me spread everywhere. Different organizations have a little piece of you, so it’s difficult to get a clear longitudinal view of your health history and issues.”

In theory, patients have a right to copies of their medical data, but this right is difficult to exercise in practice. People who want to collect a central record of their own would have the onerous task of going to every doctor, lab and hospital that’s treated them. Much of this information exists only on paper or in closed networks. Some institutions allow access via patient portals, but patients don’t control their own data, and can’t transfer it electronically to other providers.

PHR technology is a departure from the organizational control in this paradigm. HealthVault is a “cloud” service, which means personal repositories of healthcare information are set up with data feeds on the Web rather than on a person’s local PC, explains Conn. “HealthVault will have hundreds of partner applications that connect to the service. Consumers create the automated data flow in and out of their HealthVault accounts. Nothing goes in or out without their overt permission.”

Connections with healthcare organizations are at the core of the service, he says. Microsoft has already negotiated agreements to build connections for data-sharing with major American healthcare providers such as the Mayo Clinic and Kaiser Permanente, and is in discussions with many others. “They’re realizing that building all the applications they want to deploy to users is too much for any one institution, so they’re tying into what we’re building.”

Microsoft is also working with Canada Health Infoway, which is developing and promoting the architecture for a national electronic health record (EHR) system across Canada, he says.

Infoway recently announced that it is in discussions with various vendors offering PHR software to ensure products offered in Canada conform to its EHR blueprint, and contain proper security and privacy mechanisms.

“Our concern is around ensuring these products are secure at vendors’ locations, and how they transfer information from closed networks,” says CEO Richard Alvarez. “Google and Microsoft are subject to the U.S. Patriot Act, which means it’s darned important to ensure Canadian data is not housed in the U.S.”

Infoway’s mission statement includes plans to make the medical information contained in EHRs available to patients via their healthcare providers in the future, but vendors have jumped the gun by offering PHR technology today direct to consumers.

“It’s always been our mantra to improve patient care by providing the right data at the right time to the right provider, but we’ve been overtaken by events from a practical point of view. If patients can have the tools for self-care today, why not take advantage of it,” says Alvarez.

Infoway is being opportunistic as PHR technology develops and becomes available, he says. “We’re working with Microsoft, Google and other vendors who are serious about coming into the Canadian market to ensure they fully understand some limitations. So if they recognize our requirements about having data centres in Canada and ensuring privacy and security, then there can be a happy marriage with US- based vendors coming here and enhancing our EHR offerings with their PHR offerings.”

The two technologies are complementary, not competitive, says Conn. “Infoway’s approach is top-down, building a national infrastructure that’s facility-focused to connect the health universe across the whole system. HealthVault’s is bottom-up, with consumers connecting to information in the system and bringing it together in a way that’s relevant to them. Top-down and bottom-up meet in middle – if you had an entire system integrated along Infoway’s blueprint, people would still need to gather information about themselves.”

Healthcare is ultimately managed at home, not in institutions, he says. “We only spend .04 per cent of our entire lifetime in hospitals.”

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