Why Personal Health Records Have Flopped

What's holding people back from signing up for a personal health record? According to Colin Evans, former CEO of the PHR provider Dossia, it's the unwillingness of healthcare providers to give them control over their medical data.

I couldn't disagree more.

The main reason the public doesn't sign up for PHRs en mass is they don't really care that much about their health. Yes, concerns about security and privacy and the reluctance of providers to share patient information slow things down, but at its core this is about apathy.

Just look at the statistics. Despite the push by medical and technology industry stakeholders over the years, only about 10% of Americans now use an electronic PHR. And let's not forget the recent demise of Google Health, the search giant's attempt to get the public interested in PHRs.

[Which healthcare organizations came out ahead in the IW500 competition? See 10 Healthcare IT Innovators: InformationWeek 500.]

As I've said before, most Americans care more about their cars than their health. They know more about automotive specs than they do about physiological specs. Similarly, most people want to see a doctor only when something breaks down, and then they expect a pill or procedure to make things right, just as they expect their car mechanic to fix their cars. Healthcare for most Americans is about having someone else "make it better," not about personal responsibility.

Preventive medicine has always been a hard sell in the U.S. It's hard to convince most healthy people--especially men--to get a colonoscopy or any other screening test when they aren't experiencing any pain.

So how do health IT professionals fix Americans' PHR apathy? They can't, any more than physicians can fix America's obesity epidemic. These are societal problems that require massive cultural shifts.

That's not to suggest that we should abandon PHRs. Nor am I belittling the work of organizations like Dossia, a non-profit organization founded by AT&T, Intel, Walmart, and other large companies to encourage employees to get actively involved in their own healthcare. In the end, healthier employees lead to lower employer and employee healthcare costs.

According to Evans, some of Dossia's corporate clients have succeeded in enrolling as many as 80% of employees. A lot depends on how much the client company promotes the service and the kinds of incentives it provides employees. The positive results obtained by groups such as Dossia should prompt employers, insurers, and PHR vendors to continue reaching out to the public with the right combination of carrots and sticks. But by the same token, we have to accept the fact that it's going to be a very slow process, at least for most healthy Americans who visit the doctor for the occasional broken bone or sinusitis. (Those with life-threatening diseases are a different story, since they have so much more at stake in keeping track of all their medications, lab tests, and surgeries.) IT pros, like doctors, are fixers. And that's a good thing. But faster networks, more secure databases, and improved information sharing can't cure people's apathy about their own health. That social disease is going to need much stronger medicine. When are emerging technologies ready for clinical use? In the new issue of InformationWeek Healthcare, find out how three promising innovations--personalized medicine, clinical analytics, and natural language processing--show the trade-offs. Download the issue now. (Free registration required.)