Your Medical History at Your Fingertips

EDITOR'S NOTE: This article was originally published in the October 2007 issue of Kiplinger's Retirement Report. To subscribe, click here.

Wouldn't it be nice to have a health assistant remind you when it's time to schedule a crucial exam, perhaps a hemoglobin test if you're a diabetic? What if this aide could alert emergency-room personnel about your medical history, even if you're unconscious when you get to the hospital?

Such help can be right at your fingertips, in the form of a computerized personal health record. This online tool enables consumers to store health-care information all in one place. When you visit a doctor or go to the hospital, you can, with a few keystrokes, electronically send information to the provider or take a copy with you. As for that unplanned emergency-room visit, you can carry a portable device on your keychain that stores important medical data or a wallet card noting your password, for example.

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A personal health record, or a PHR, may have saved the life of Pam Hellen's mother. One evening in July, Hellen's mother, who suffers from heart problems, complained of lightheadedness. Before going to the hospital, Hellen, 60, stopped at her computer and printed her mom's medical record, which was located on FollowMe (www.followme.com), sold by Access Strategies, a firm in Sonoma, Cal.

Hellen, who also lives in Sonoma, believes that the computerized record was crucial to her mother's quick recovery. The emergency-room physicians could quickly view the medicines she was taking, as well as details about her recent visit to the cardiologist. "The PHR gives me such peace of mind," says Hellen, who also keeps health records for herself and her husband. "If doctors do not know what medicines a person is on, there's a real danger of drug interactions."

Hellen and her mother are in the vanguard of a revolution in health-care information. While it's easy to gain computer access to your financial data, the medical system has been slow to join the digital age -- possibly placing patients at risk. According to the Institute of Medicine, for instance, 1.5 million patients each year are hurt by taking the wrong medicine or dosage. Experts believe that many errors could be avoided if providers have the proper information.

As it stands now, a patient's medical history is often scattered among many doctors and hospitals. A PHR could include a family medical history, reports on diagnoses and surgeries, lab results, handwritten physician notes and a list of medications.

Besides improving safety, this technology can save you hassles. If you switch doctors or if a hospital closes, you don't have to retrieve your health records. Also, says Tracey Baker, a certified financial planner in Fairfax, Va., "A PHR may actually help you save money by cutting down on duplicate tests and unnecessary treatments."

Personal health records are not to be confused with electronic health records, which are created and controlled by hospitals and doctors for their own use. The federal government is encouraging providers to create a national system of electronic records, which would eventually connect all patients' records to health-care providers, pharmacies and insurers.

Choosing a Computerized Service

About 200 PHR systems are available, reports the Markle Foundation, which conducts research on technology issues. The number is growing, and Google and Microsoft are readying their own initiatives.

Each has its own bells and whistles. Still, when it comes down to it, you have two basic choices. You can enlist with a standalone supplier, such as FollowMe, which requires you to collect the records and then type, download or scan the information. Or you can arrange for a "tethered" PHR, usually through your health insurer, which transforms your medical and pharmacy claims data into a consumer-friendly layout.

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Standalone services come in a couple of formats. FollowMe is an Internet-based PHR, meaning that you store your records on the firm's server. A doctor could tap into your record if you give him or her your password. An alternative is to purchase a PHR software program, which stores information only on your desktop. That's a big selling point of CapMed (www.capmed.com), a division of Bio-Imaging Technologies, in Newtown, Pa. You can download key data to a USB device or a disk.

Some standalone PHRs are tailored around specific conditions. If you have diabetes, for instance, take a look at www.myhealthkeeper.org.

If you prefer paper records, you can find forms at several sites. Costs for computerized services run from free to $100 a year. To find links to several dozen Internet, software and paper suppliers, visit www.myphr.com and click "Additional Resources."

Whatever standalone PHR you choose, you first must collect records from physicians and medical facilities. Federal law gives patients the right to their records. You'll have to sign a release form, and perhaps pay a copying charge. If a physician has died, the doctor's partners, the local hospital or medical society may help you locate the records.

The time it takes to create your record depends on how much information you want to include. It can be daunting to log a physician's notes from each visit, but such detail may not be necessary. You can choose, for instance, just to note your medications, allergies and an important medical condition. If a provider already keeps computerized records, ask for yours to be electronically transferred. Otherwise, you will have to scan or type in the data. Depending on the vendor, you can download X-rays and other images.

A big advantage of the standalone PHR is that it is owned by the patient. You don't have to send certain information to a physician if you don't want to. "The consumer is the focus," says Cynthia Solomon, who developed FollowMe after spending years collecting information for an ill son.

Tethered to Your Medical Record

To avoid the hassle of data collection, ask your employer or health plan if it offers a personal health record. Dr. Archelle Georgiou, executive vice-president for UnitedHealth's OptumHealth unit, says that a major benefit of the tethered model is that consumers do not have to create their records. The insurer will set up the file using your claims data, and it will update the record each time you seek care.

Tethered personal health records can also provide services that many standalone plans don't. With some, members can send an e-mail to an online nurse, as well as compare providers on price and quality. Many PHRs will send members personalized alerts, such as a reminder to schedule a mammogram. "We can turn that claims information into valuable health information for our members," Georgiou says.

However, when you leave the plan, you can't take your tethered record with you. Also, the record usually only contains information on the care you received while enrolled in the plan, although new members are often asked to answer dozens of health and lifestyle questions. But many consumers may feel skittish sending lots of new information to an insurer.

Meg McCabe, who heads Aetna's electronic-products unit, says that the added data "will not be used for underwriting purposes." Instead, she says, "it will be used only to try to improve your health."

Pam Hardcastle doesn't worry that the family history she provided to her Aetna Care Engine-Powered Personal Health Record will be used against her. When she recently started using the PHR, it already included two years' worth of her medical and pharmacy information. Soon after, Hardcastle, 50, a senior information technologist at Dow Chemical, added data, including her mother's death from cancer.

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Hardcastle believes that the tool will help to improve her health care as her PHR begins to offer wellness advice and a drug database that looks for interactions. She uses the service mostly for record keeping. "I'm pretty organized, but I can never remember when I had my last tetanus shot," says Hardcastle, who lives in Lake Jackson, Tex.

Can You Trust Your Personal Health Record?

As Pam Dixon sees it, consumers have more to lose than to gain with personal health records. Dixon, executive director of the nonprofit World Privacy Forum, says that consumers should keep their medical records in a paper file. That reduces the risk of your records being hacked or sold.

If you sign on with a firm that stores your information on a server, ask how it will protect your health data. "A lot of privacy policies say if we sell our company your medical records will also be sold," Dixon says. Read the privacy policy carefully.

Find out if the company is covered by the federal Health Insurance Portability and Accountability Act, known as HIPAA. Covered entities are regulated in handling patients' medical information. Vendors that claim that they are "HIPAA compliant" are not covered. Others may have contracts with noncovered firms. Dixon says consumers should "think very hard" if a firm is not covered by federal privacy laws.

Also, find out whether you can control what's in your record and who sees it. UnitedHealth's service doesn't allow you to select which parts of your record a provider could see. Ask whether outside entities can buy your information and whether you could delete certain records.

Whether or not you decide to go with a personal health record, you can expect to see their use grow. Medicare is planning to offer personal health records to all beneficiaries at some point, and it is overseeing a pilot project with some Medicare Advantage managed-care plans.