HealthVault Stirs Debate over PHR’s Privacy and Proper Role

While HealthVault is more connectivity platform than product — contrary to popular belief, it’s not a personal health record (PHR) by itself — people already are taking sides on its approach, just weeks after the official launch. (See “Microsoft Debuts HealthVault.”) Even though HealthVault is not a PHR on its own, many of the more than 200 other companies that have agreed to use the Microsoft platform are integrating HealthVault technology into their own PHRs.

Last week, the bipartisan Coalition for Patient Privacy, headed by Deborah Peel and her Austin, Texas-based Patient Privacy Rights Foundation, sent a letter to members of Congress urging passage of national privacy legislation to supersede HIPAA. Peel has emerged as a staunch supporter of HealthVault.

In deriding the HIPAA privacy rule as a “disclosure rule,” the letter calls for patients to have the right to give or withhold consent to use and disclose electronic health data and the right to “segment” the information. Microsoft was among the nearly four dozen signers, which included organizations on both sides of the political divide.

“Current laws do not adequately protect electronic health records, leaving the marketplace for ‘personal health records’ and other products the ‘gold rush’ of Health IT,” the letter reads.

In boldface type, the letter adds, “When patients do not trust doctors or the health care system to protect their privacy, they withhold information, they delay or avoid care, and they become sicker.” Later, the following sentence appears, underlined: “Corrupted, incomplete, and false data will not enhance or improve medical outcomes or research — it will make them exponentially worse.”

On that point, at least one HealthVault critic agrees.

Kim Slocum, a health-IT consultant in West Chester, Pa., says that excluding records of treatment for a psychiatric condition or sexually transmitted disease, for example, could result in an incomplete medication list and potentially lead to a harmful interaction. For this reason, Slocum believes physicians may frown upon information not in “a pristine form,” and wonders whether it really is OK for patients to withhold information from certain providers.

“Your medical record is a binary thing. It’s either on or it’s off,” he says.

More importantly to Slocum, however, is the notion that patient-supplied PHRs somehow can drive adoption of electronic health records (EHRs) among clinicians. “I think the idea of the consumer being a catalyst in [health-IT] is ridiculous,” Slocum says. “I think that talking about PHRs is putting the cart before the horse.”

He likens the PHR to personal financial software like Quicken or Microsoft Money. A small minority of users took the time to enter data manually, but the segment didn’t truly grow until online banking took off, making it easy for consumers to manage financial information. “You’ve got to get [PHRs] so they auto-populate with clinical information,” Slocum says.

Furthermore, he adds, surveys have shown that the general public still is wary of their health information being stored anywhere but within a provider organization. “They’d want it housed in some place that they perceive as non-threatening,” Slocum says. “Microsoft is less threatening than an employer or health plan.”

Still, Fred Trotter, a longtime advocate of open-source software in health care, suggests that no single non-health care company is worthy of stewardship of medical records.

In a series of blog posts this week, Trotter calls the Redmond Empire a “sleeping watchdog” and says that possible standards for HealthVault PHRs such as the Continuity of Care Record could suffer from a “dialect problem” when actually implemented.

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