Personal health records not dead yet, experts say

Are patients not using personal health records because they don't need them, or because they don't trust vendors with their privacy? Physician encouragement may be the key.

Just 10% of Beth Israel Deaconess Medical Center patients use the site's personal health record (PHR) system, CIO Dr. John Halamka reported recently in a presentation on personalized medicine at Bio-IT World.

His facility's patient population seems to be a bit more connected than the rest of U.S. population in general. But it's not by much. Last year, a California HealthCare Foundation survey found that 7% of patients nationally used personal health records. That's up from 2.25% in 2008, according to a Manhattan Research survey.

That doesn't surprise PatientsLikeMe founder Jamie Heywood, whose site serves as a social network and clinical research platform for more than 100,000 patients who are "really sick," as he puts it, and exchange data about their 500 different illnesses. The people who use his site tend use PHR systems for aggregating test results, prescription data, and information from physician visits. They do this in order to take charge and advocate for their own care.

People who aren't sick don't need personal health records. Like Heywood himself.

"I have this lump on my head that I've had for 20 years," Heywood said. "It's never become an issue, I don't care about it, it's not a big deal. I have some old MRI films kicking around -- or not. I'm never going to invest a moment in looking at that. In fact, I haven't had a tetanus shot in a decade because I'm so lazy and I don't like doctors. Health is just a nonissue for me, so therefore I won't invest time in it."

From his health IT vantage point, Heywood thinks a 10% PHR adoption rate might be "the best we'll ever get," because there's little reward for healthy patients to invest time aggregating their health data in these online repositories.

Indivo developer: Patients don't trust current PHR systems

One barrier to PHR adoption could be patient trust, said Dr. Kenneth Mandl, codeveloper of Indivo, a PHR platform, and faculty in the Informatics Program at Children’s Hospital Boston. He said that Google Health modeled its architecture on Indivo, and Microsoft HealthVault utilizes some of its code. Dossia, a PHR used by a consortium of employers, also was developed using the Indivo platform.

I haven't had a tetanus shot in a decade because I'm so lazy and I don't like doctors. Health is just a nonissue for me, so therefore I won't invest time in it.

Jamie Heywood, founder, PatientsLikeMe.com

But it's not the code base that worries patients, Mandl said. It's the commercial nature of the companies running them.

"These technologies, run by large employers, by Google, by Microsoft, the implementations have been plagued by problems of trust and transparency in how the information is stored and what it will be used for," Mandl said.

He expects more patients will sign up in the next two years, with the next stages of meaningful use driving PHR adoption. Once the federal government requires health care providers to furnish patients with an electronic copy of their medical records, Mandl believes the implementation of that requirement will come in the form of online personal health records.

"I think the pronouncement of low adoption and low consumer interest [in PHRs] is a bit premature," Mandl said. "I don't think the offerings have been up to snuff just yet…it's [not] necessarily [true] that consumers aren't interested in managing their health online."

Another factor he believes will drive PHR adoption is social media, because patients have shown "great willingness" to discuss their health matters online. Combining personal health records and social media, Mandl theorized, could drive adoption rates.

Future of PHR adoption hinges on physician encouragement

John Moore, principal analyst for Chilmark Research and health IT blogger, recently reported that Google Health is in stasis. That comes not quite a year after he had buried Google Health and then backtracked slightly after the typically mum search-engine giant broke its silence.

Moore wrote in an email to SearchHealthIT.com that he sees several trends driving PHR adoption, weak as it is. One is an increasing number of baby boomers taking care of elderly parents -- in some cases, remotely. In those scenarios, aggregating data from several providers in one spot, such as Google Health or Microsoft HealthVault, makes sense.

Like Halamka, Moore believes that consumers will buy into personal health records if providers can hardwire convenience features into them -- online prescription renewals, caregiver communication, appointment bookings and even radiology images.

On the other hand, like Heywood, Moore believes that, while sick patients quickly see the value proposition of personal health records, healthy patients don't necessarily need to worry about it.

Physicians could fill the breach and convince patients to open PHR accounts, giving the technology a needed boost -- but they're not, yet.

"Trust does matter, and patients/consumers do trust their doctors," Moore wrote. "If the doctor encourages use, adoption will follow. Unfortunately, sites like Google Health, HealthVault and Dossia are one step removed from these types of transactions, and their use is not actively encouraged by clinicians, leading to anemic adoption rates."

Let us know what you think about the story; email Don Fluckinger, Features Writer.

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