Patients' Next Choice: Whether to Keep Files Stored on the Internet

By Ann Carrns

Lorraine Girard-Cryodon, a 43-year-old Vancouver, British Columbia, woman, was surfing the Web when she clicked onto PersonalMD.com. The site offered a free service allowing her to store and access her medical records via the Internet.

Ms. Girard-Croyodon, who takes medication to control epilepsy, signed right up. She liked the idea that if she falls ill or has an accident while traveling, an emergency-room doctor can log on and retrieve her records over the Internet. "My medications change from time to time," she says, and could clash with other drugs.

Consumers will soon be deluged with options for maintaining their medical records on the Internet. Some services in the pipeline, like the tentatively named AboutMyHealth.net, from MedicaLogic Inc., Hillsboro, Ore., will primarily be made available to patients through their doctors, who will maintain the data.

Others, like PersonalMD.com, an offshoot of closely held NeoTrax Corp., Pleasanton, Calif., plan to work with doctors and health systems but are initially recruiting consumers directly.

A similar offering is in the works from drkoop.com Inc., the Austin, Texas, Internet health company founded by former U.S. surgeon general C. Everett Koop. The patient is responsible for entering and maintaining data, and deciding who gets access. "If you wait for your doctor to do it, it will never happen," says Donald Hackett, chief executive of drkoop.com. PersonalMD, launched in July, works like this: Consumers go to the Web site to select a log-in name an personal identification number. They type in information, such as age, blood type, prescription medications, drug allergies and emergency telephone numbers. They can also fax documents, from living wills to electrocardiograms, directly into a secure database.

Members receive a wallet-size plastic identification cards listing emergency phone numbers, the system's Web address and their fax ID number. If they choose, they can also list their PIN, allowing doctors to access emergency information even if the patient is unconscious.

It's too early to tell how well Internet-based medical records will work in practice. Not all emergency rooms, after all, are wired to the Internet. And there's the question of whether patients will keep their records current.

Market research by VHA Inc., a national network of hospitals and their doctors, suggests patients prefer tapping into their doctors' records rather than maintaining parallel files. Harvey Anderson, general manager of Internet operations for MedicaLogic, says electronic records maintained by the doctor are more reliable and up-to-date.

Some question whether busy medical staff will be able to keep up with demand from patients for their records. Brent Lambert, a doctor whose Christiansburg, Va., group practice is participating in a trial of MedicaLogic's AboutMyHealth product, says providing copies of paper records to patients and other doctors is already so burdensome that he has to contract out work weekly to fill all the requests.

But supporters predict that patients, especially those with chronic conditions, will keep their files current because their health is important to them. By maintaining their own records, patients can include over-the-counter, or alternative drugs they might be talking.

Says Ms. Girard-Croydon: "I keep good track of my records, because I think you're responsible for your own medical care." She says her doctors support her use of PersonalMD.

Proposed federal regulations would require doctors to give patients prompt access to records. Currently, access is governed by a patchwork of state regulations.

Privacy concerns are the main pitfall of Internet medical record systems. Electronic records are potentially at the mercy of anyone in the world with a computer. Proponents argue that paper documents aren't secure, only there's no way to know if any unauthorized person has seen them.

Electronic records, which require a code to gain access, leave a digital trail of who has viewed them. The AboutMyHealth prototype, for example, lets patients click on a list of everyone who sees their chart. They can ask their doctor why a particular person viewed their records.

Melissa Bowling, a 26-year-old office manager in Independence, Mo., hesitated before finally entering her family's health information into PersonalMD. She broke her neck as a teenager and feels an ER doctor would need to know that.

Representatives of all the services insist they use secure technology, and that only authorized users see the records. Data are encrypted, so even company employees can't read them without permission. MedicaLogic and drkoop.com say they will use a feature called a digital certificate, a kind of additional password, to provide an extra layer of protection.

Also of concern is how patient data will be used by the service companies. Patients are terrified about one day finding junk mail from some unsolicited company or group concerning their private diagnoses

The compnaies insist they won't sell any member lists. They will, however, ask members if they want to be put on lists to receive information on new products or treatment relating to their condition, and on any clinical trials.

The services, in general, expect to earn money by helping to sign up patients for trials and by attracting advertisers, such as drug companies eager to reach consumers who might buy their product.

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