Time to Switch to an Online Personal Health Record

Katherine Hobson

If you're like most people, your personal medical record is a multiheaded beast: pieces of information scattered among the offices of multiple physicians, prescription data at a handful of different drugstores, and a manila folder full of receipts and lab reports in an overstuffed file cabinet at home. Now that it's possible to tame the beast, should you? A host of Web-based personal health records, or PHRs, have been rolled out over the past few years, including offerings from Internet heavyweights Google and Microsoft. The pitch: a central repository for all your health information--from family history to lab results to cholesterol readings--gathered from all those disparate sources, and ways to share it with doctors or other people that you deem appropriate. Plus, cool tools that draw on your information to alert you, for example, if you are taking medications that might interact, or to help you track weight loss. But there are cons as well as pros to putting all your personal health information online.

First, some background: The PHR that you can access on your computer as easily as checking your E-mail does not belong to your doctor. She has her own files full of your medical charts, either in digital form or, more commonly, on paper. (And she's getting a big push from the Obama administration to convert hers to the digital format in what most say is the inevitable national conversion to electronic medical records, which are supposed to improve the flow and quality of information, lower costs, and benefit your health.) Your PHR is your own collection of all or part of this information.

Personal health records are offered by a variety of sources--employers, insurers, healthcare organizations, and companies that aren't in the healthcare arena. Kaiser Permanente said in April that more than 3 million of its 8.6 million members use its My Health Manager system to access their records, make appointments, look at lab results, and order prescriptions. The Cleveland Clinic also offers its own PHR to its patients for managing information and appointments. Your employer or insurer may also offer you a PHR through sites like Dossia or WebMD. Finally, there are stand-alone sites, including Google Health, Microsoft HealthVault, Revolution Health, and PassportMD, all of which offer PHRs to people whether or not their employers, insurers, or doctors are on board. If your doctor or insurer is on board, some of those sites allow you to transfer information directly to your personal record.

Most anyone can imagine how helpful these online records might prove to be at some point. If you were on a work trip and developed a sinus infection, you could call up a list of your medications so that your out-of-town doctor could check for interactions with the antibiotic he wanted to prescribe. But certain people will find PHRs particularly useful. If you have a chronic condition like diabetes or heart disease that requires active management and a lot of information juggling, you're an obvious candidate, says C. Martin Harris, an internist and chief information officer at the Cleveland Clinic. Even more helpful for these frequent users is making it a team effort and getting your doc, even if he is still in the era of paper records, to log on once a week or so and look at the data you've recorded--say, checking your blood glucose levels to make sure they're in line. Don't be afraid to ask him to participate, says Steven Waldren, a physician and director of the American Academy of Family Physicians' Center for Health Information. "Be a little forceful," he says. "Say, 'I'd really like to try this. Can we figure out a way to make it work?' " Also likely to find PHRs worthwhile: people who are caring for an elderly relative or parents in joint-custody arrangements who split time with their kids and want access to things like vaccination records.

For those of us with only occasional medical problems, convenience will likely be the biggest factor in deciding whether to use a PHR and, if so, which one. Everyone is busy, and gathering paper records from multiple sources and then manually entering the information is tedious; all but the most tech-crazy users are likely to abandon a PHR unless it makes collecting and managing data easy. Google Health and Microsoft, among others, provide secure access to some health insurers, pharmacies, and providers so you can request and upload your records, saving yourself some work. Even if your doctor hasn't already moved into the 21st century, those sites can link you to third-party applications like yourHealth (by healthcare services company Unival) that, if you send them your paper records by fax, will scan and digitize them and put them in your PHR. Revolution Health will upload information faxed from your medical providers for free. But elsewhere you may pay for this and other time- and labor-saving applications. The stand-alone PHR company PassportMD, for example, charges an annual fee and then has an a la carte pricing structure for collecting your information for you, including, say, X-rays and CT scans, and putting them into your electronic file.

You might want to poke around for information and applications that can help you manage your health in other ways, too. The PHRs offered by WebMD and Revolution Health feature a host of information that's applicable to your conditions. Apps on Google Health and Microsoft HealthVault from companies that make glucose meters, scales, and blood pressure monitors will automatically upload data from those devices to your online record. There's a health-related app for almost everyone: You can monitor your mood swings, pick a cheaper prescription medication, track the distance of your weekend long run, get a suggestion for a birth-control method, and find a clinical trial, among other things. (Just be sure you know what access you are agreeing to give these third parties when you sign up and be sure you're OK with it, and with any cost.).

As promising as they are, PHRs aren't without drawbacks. One issue: The quality of information that you'll get from sources like insurers isn't always perfect, says Christine Chang, an analyst with the market research firm Datamonitor. Your record may include misdiagnoses, or billing codes for one condition--say, one type of infertility--that was used only because there was no code for the correct type. Some PHRs allow you to delete records or annotate them to explain or disagree with them. The flip side of that is that for an online personal medical record to be useful to you and to the doctors you may want to share it with, you have to put in the man-hours to keep it current. Think of it as a work in progress instead of the final word on your health.

The biggest issue, though, is that of privacy. Analysts aren't so worried about someone hacking into a server and stealing your data--at least, they're no more worried about that than they are about someone hacking into a bank's server and stealing your financial info (and many of us now swear by the convenience of online banking). Of course, you should take the standard measures to protect your info: Pick a good password, which means a combination of letters, numbers, and symbols, and not the same password you use everywhere else, says Deven McGraw, director of the Health Privacy Project at the Center for Democracy and Technology. And be sensible. Entering information about your STD diagnosis is probably best not done while using a communal WiFi connection at the corner coffee shop.

But privacy experts are more worried about what happens when your personal medical information leaves its home in your doctor's or insurer's electronic or paper files, where it is protected by HIPAA, the federal law that strictly limits access to people's health records, and lands in the server of Google or another third-party PHR company. Once it's there, it's no longer protected by HIPAA, says Pam Dixon, executive director of the World Privacy Forum, a nonprofit public-interest research group. Companies offering PHRs want to keep their good names by protecting you, so most explicitly state that they will not provide or sell your information without your specific consent. Privacy groups, however, are hoping that more definitive laws protecting PHR privacy will be nailed down by Congress. To be safe, pick a reputable company if you're using a stand-alone PHR, and read and understand its privacy policy, says McGraw.

And remember, there are plenty of other ways to manage your health records off line, from typing up and scanning records yourself and keeping them all in a computer file or USB flash drive to simply creating a paper record that includes your doctor's contact information, medical history, health insurance information, legal directives, and other key data. Check out myPHR.com, a project of the American Health Information Management Association, which can help you find software packages and paper-based systems that will let you store your information the old-fashioned way.

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Time to Switch to an Online Personal Health Record