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A slow journey toward PHRs

August 1, 2008
by David Raths
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There's a lot of interest, but the field is not adopting them as quickly as other areas of healthcare

Marlowe Greenberg, CEO of Foothold Technology, whose software is used by hundreds of behavioral health organizations, says that he is not yet hearing demand from customers to provide modules that allow consumers to have access to their records.

“If patients could trust the security of something like Microsoft's HealthVault, then it would be wonderful as a place to keep their personal records,” he says. But one hang-up is interoperability with providers' EMRs. The information in PHRs is most valuable if patients can share it easily with clinicians. “The system the doctor or provider needs to use would have to reformat that information to get at it,” says Greenberg, who is SATVA's chair-elect. “Those two pools of information are in very different formats now. Having them in two systems sort of eviscerates the usefulness of both of them.”

But some of those barriers are beginning to disappear. To address the issue of patient-physician communications, Medem, Inc., has a PHR called iHealth Record. Medem was founded by the American Medical Association and other medical specialty societies to offer physician practices an online suite of medical practice Web sites called iHealth. Medem has integrated iHealth with Google Health to allow users to share information from their Google Health profile with doctors using iHealth. The iHealth Record has been available for three years and has 500,000 users and 10,000 physicians actively promoting it, according to Medem CEO Edward Fotsch, MD.

“The most important thing we hear is that it is a vehicle for sharing information with their doctors, rather than for just abstractly gathering the information for their own use,” he says.

Dr. Fotsch notes the importance of such communication especially in behavioral healthcare. “Rather than getting to an appointment and trying to remember how they felt earlier, [patients] can start writing it into an online repository that they control, and then if they want to share that with a psychologist or psychiatrist, they can,” he says. “People tend to be more willing to type something in than to say it verbally.”

San Francisco takes first steps toward PHRs

PHRs are on the agenda of the City and County of San Francisco's Department of Public Health, thanks to determined local advocacy groups and state funding made available by California's Mental Health Services Act. Passed by voters in 2004, the act expands county mental health programs, including through improved use of information technology.

“Part of that effort involves increasing consumer and family empowerment,” says Nan Dame, behavioral health information systems manager for the department, which sees 20,000 behavioral health clients annually at 23 city-operated clinics and 185 community-based contractors.

San Francisco is developing a full EMR for e-prescribing, clinical data management, and data exchange with other counties. PHRs are also part of the long-term picture, Dame says.

“Mental health advocacy groups have been asking for consumer access and input, and more computing resources at their disposal,” she says. “They want it to be more participatory. Consumers could be adding information in between visits, a depression scale or a side-effect scale, that could make visits with clinicians richer.”

Once an EMR vendor has been announced, the public health department will work on establishing a consumer portal, although it's not clear yet what form that will take. “We have hired a consumer advocate to facilitate community meetings about what a PHR would look like,” Dame says, “and then we can submit a request for funding to the state.” The PHR implementation is scheduled for 2013.

—David Raths

Tethered PHRs

Some software vendors are creating consumer portals into providers' EMR systems. These portals usually allow consumers to see some of their record, to send e-mails, and to schedule appointments, but not to enter or change any data. These often are referred to as “tethered” PHRs because they are linked to a single provider's or health plan's system and data, which also limits their usefulness. For instance, an individual could see a primary care physician, dentist, and psychologist who each has his/her own tethered PHR—none of which can exchange data.

One example of a tethered PHR is Netsmart's ConsumerConnect Web portal. Scalia showed clients a prototype a year ago, and focused on changing demographics to convince them of its relevance. “I showed them the schizophrenic-bipolar group in MySpace,” he recalls. “There are 1,800 users. They might talk about medications they're on, or they might talk about a U2 concert.” Scalia points to consumer studies finding that younger consumers want to interact with clinicians via the Web, e-mail, or text messages. “You might push them text messages to remind them to take meds,” Scalia explains, “so the technologies can lend to continuity of care.”

ConsumerConnect was released this past May, and Netsmart is working on its first installations this summer. Scalia acknowledges there are still many issues to work through. “There's no unanimity about who should have control over the data,” he says. Some advocates say consumers should see and control everything, while some providers want to control what consumers see. Netsmart built its system with settings to allow organizations to select which data to share.