Not Enough Time on My Hands for an Online PHR

I had such a clever idea for this week's column: I would test a number of free online personal health record sites and write about the experience. About four and a half hours into my research—with only one prescription and a list of the vitamins I take daily entered into just one online PHR site—I realized that I would have to either abandon the project or abandon all hope of meeting my deadline.

My personal health record currently consists of a file in my home office stuffed with random papers—bills, test results, receipts for co-pays, old insurance cards, and notes scribbled on scraps of paper—from a number of different sources. My most comprehensive record is a little blue book with my childhood immunizations recorded in fading ink in my pediatrician's scrawling hand. I've moved and changed providers often enough that many of my records are likely lost forever.

Theoretically, I could share my paper file with my physician and any specialists I see. But an electronic record that can be shared via the Internet would be so much simpler. It's especially appealing if you see a number of different providers, as you could allow each of them access to the record and make sure that your primary case physician knows that your acupuncturist has recommended you take an herbal supplement that might interact with a prescription medicine—to cite just one of many examples. And for patients with multiple health issues who see multiple providers . . . well, the benefits multiply exponentially the more health issues you have.

There are many other benefits, as well. Online records have the potential to engage, empower, and educate patients in a number of ways. They can be used to share condition-specific information, teach patients how to make healthy lifestyle choices, and foster dialogue between patients and caregivers.

That's how it would be in an ideal world, anyway.

In 2009, Dave deBronkart (who would later become a patient advocate) famously tried to import his medical records from Boston's Beth Israel Deaconess Medical Center using Google's free online PHR, Google Health. Because some of the data was pulled from coded billing records, a number of conditions he was tested for showed up on his PHR as if he suffered from all of them.

"The problem is this kind of information should never be used clinically, especially if you don't have starting or ending dates" attached to each problem, deBronkart's primary care doctor, Daniel Z. Sands, told the Boston Globe. (Both deBronkart and Sands were named to HealthLeaders Media's 2009 20 People Who Make Healthcare Better list.)

As far as I can tell, not much has changed since then.

When I imported my health data into Google Health from my insurer, I got the list of every condition that I've been tested for—but no outcomes. So although I can see that I've had cholesterol tests every year, I couldn't see my year-over year results—a feature that would be extremely helpful.

Another error that popped up—when one of my prescription medications became available in generic, I switched over. But now Google Health is keen to warn me that taking the name-brand drug and its generic equivalent together could cause an adverse reaction. Terrific advice—except I'm not taking them both.

Finally, there were terms in my imported data that I didn't know. I was alarmed to learn that I have hypermetropia—at least until I looked it up and learned it just means I'm farsighted.

Online PHRs are a great idea. And they might work well—someday. But for now, the hassle factor (supplementing the raw data with details, figuring out which warnings to heed and which to dismiss, and researching what all those medical terms mean) is a huge drawback. One that will likely prevent me from completing an online PHR (let alone comparing a number of them) even though I really want one.

When I described my experience setting up my account to family, friends, and co-workers, even those who like the idea of having an online record they can share with their providers and loved ones agreed it sounded like too much effort. And many noted that even if they did do all that work to create an online PHR, the chances of their online provider actually looking at it or populating it with helpful educational information were slim.

As one person I spoke to noted, physicians barely understand patient experience—are they really ready for the e-Patient experience?

The answer in most cases, in case you were wondering, is no.

Bottom line: I would love an accurate and historical picture of my health in an online format. And I know I'm not alone. But as it stands now in order to make it happen I'm going to have to do most of the work myself. And, after all, isn't the whole point of electronic records to share information between patient and providers? As an uncle of mine said, if the online PHR were a street, it would be a one-way.