Keeping the Record Straight

New software lets you gather and update your medical history.

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Hospitals and doctors are putting their paper records into digital form—and now you can, too. Having an electronic "personal health record" has been "a huge timesaver," says Suzanne Mintz of Kensington, Md., who runs the National Family Caregivers Association. Her husband, Steven, has had multiple sclerosis for 33 years, but they can now provide years of his neurological and medical reports to a new doctor at the touch of a button.

An array of Internet services and software for everything from desktops to pocket PDAs and cellphones now allows you to gather your medical information from various sources and update it easily. The idea: Having that health history at your fingertips—including any medications you're taking and the dosages, your lab results, and even your living will—makes for better, more coordinated care. It's particularly useful, says Eric Pan, an instructor in medicine at Harvard Medical School and a senior scientist at the Center for Information Technology Leadership, for the person "seeing an allergist, a cardiologist, and a radiologist—sometimes all in the same day."

If storing the data at home is what you aim to do, a desktop program or an Internet-based system like the one the Mintzes use may be the answer. HealthFrame is a downloadable product available for about $40 that lets users keep track of appointments and medications; input indicators like blood pressure, weight, and cholesterol and graph them over time; and attach original documents, such as doctors' notes and billing receipts. For $5 a month (or $8 for two people), the Internet-based Medikeeper adds access to a "MediLibrary" of information on diseases and a toll-free number that health professionals can call to access medical records in an emergency. Two weeks ago, Microsoft announced that it would enter the business. Users of its new online HealthVault service can upload and store their medical information free. For a fee of $9.95 a year, a HealthVault partner program called icePHR will soon make that information available to emergency medical personnel who are treating patients after accidents, say. They'll punch in a number stored in the person's cellphone.

Insurer plans. A growing number of health plan providers, including Kaiser Permanente, Aetna, and Partners Healthcare in Boston, are creating Internet-based systems that are integrated with the companies' own electronic medical records. Participants can add information as desired but have the advantage of being able to capture much of their data in one place.

Some experts worry that insurers' information may not be specific enough, however. "Many of these systems rely on insurance billing codes for storing health data, which may not reflect the precise nature of your condition or may be too broad a description of the kind of care you have received," says Margret Amatayakul, a health information technology consultant in Illinois. Another point to consider: Do you have the right to update or change information in your record? Deborah Peel, a psychiatrist in Austin and founder of the Patient Privacy Rights Foundation, advises finding out whether the data can be shared with your employers, mined by other companies, or used to deny coverage.

If portability is your goal, you might consider the $50 EMRy Stick, which plugs into any USB flash drive. You can create up to 10 different medical profiles—a boon for large families—and print summaries of the data. By plugging the drive into their office computers, doctors can update the information for their patients while printing out copies for their own records. If the stick is lost—one curse of portability—patients are protected by a password and automatic data encryption. For $25 a year, MedeFile (medefile.com) lets users access their medical records from hand-held mobile devices like PDAs and smart phones and fax the records and emergency information to doctors and hospitals from anywhere there's a signal.

As is true with electronic budgeting and bill-paying, it takes some legwork—and computer savvy—to get started. The patient must gather the data and upload or input the information into the program. Another sticking point is that some doctors are hesitant to trust information provided by their patients. You'll certainly want to check out the security and privacy policies of the products or services you're comparing on their websites, advises Steve Downs, deputy director of Health Group at the Robert Wood Johnson Foundation. One place to find the websites of available products is myphr.com, a service of the American Health Information Management Association, which this month launched a public awareness campaign about the benefits of personal health records. The key perk? More control. Says Daniel Sands, senior medical informatics director at Cisco Systems and a practicing physician at Beth Israel Deaconess in Boston: "You as the patient are a much bigger stakeholder in your health than I am."