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Researchers Checking Up On Patients Using Digital Records

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By LAURAN NEERGAARD, The Associated Press

Published: February 5, 2008

WASHINGTON - Just like with do-it-yourself taxes, a growing software industry lets patients create their own personal health records. No more answering 10-page questionnaires every time you visit a new doctor - just hit the print button before leaving home to arrive armed with your life's medical history.

Doctors have been slow to switch from error-prone paper records to digital ones, so the trend promises to empower patients to take matters into their own computers.

But can using personal health records make you healthier? The government is spending millions on the first studies to find out and, if so, the findings would give doctors a big push to get on board.

The idea: Put records from every health encounter in one patient-controlled spot, such as a password-protected Internet site. Then if you travel, change doctors, or a disaster destroys paper charts - like when Hurricane Katrina flooded doctors' offices - you'll always have on hand information that could prove crucial.

But the quality and scope of records programs varies widely, and a good one is supposed to be more than a static repository.

Engaging Patients In Care

Say someone with hypertension starts listing morning blood pressure in a program that automatically creates a graph. It shows a pattern of spikes that a one-time check in the doctor's office never would catch, prompting a call for help.

More sophisticated programs allow e-mail for prescription refills, automatic downloads of lab-test results, even blood pressure monitors that plug into the computer to directly record measurements.

"As patients, we don't think of ourselves as the person driving the health care," says Peggy Wagner of the Medical College of Georgia, who is leading one of the studies. Personal health records may be "changing what it means to be a patient."

"People want all their information at their fingertips," adds Julie Gerberding, head of the national Centers for Disease Control and Prevention.

She says records programs are evolving much as online financial tools for tax preparation did, eventually giving people more control and understanding of complicated data.

Weighing Digital Advantages

Yet just having online records isn't automatically better than a family keeping good paper records.

"It's not about a PHR in every pot. It's about PHRs that make a difference," says Jon White, health technology chief for the Agency for Healthcare Research and Quality.

So his agency is funding four projects across the country - in California, Georgia, Iowa and Virginia - to compare whether patients randomly assigned to use strong patient health records fare better than their counterparts who don't go digital. The studies will measure such things as improvement of chronic diseases, use of cancer screenings and immunizations, and proper medication use.

The Medical College of Georgia, for example, will track 720 patients with high blood pressure. Half will get standard care. Half will be taught to use a patient health record that links directly to the health system's records and allows patients to record daily blood pressure, diet and other lifestyle factors and e-mail doctors.

Floyd Moore, 60, of Augusta, Ga., is testing the program. He has congestive heart failure, and uses software daily to record his blood pressure and fluctuations in weight that could signal dangerous fluid retention.

But he's finding more valuable the software's warnings about interactions between various prescription and over-the-counter drugs. Moore also has a kidney condition and arthritis, and says his doctors' paper records seldom have his medications completely up to date.

"It's always something that's changed," says Moore, who prints his medication record and brings it to every appointment.

President Bush says all Americans should have electronic health records by 2014. That focus has been on converting patients' formal charts - the records controlled by hospitals and doctors - from paper to digital, to reduce paperwork costs and medical errors.

Although large hospital and insurance networks are making the switch, few private doctors have. However, software differences mean doctors' systems can't always share information.

Hence the patient-driven trend. More than 100 vendors, from insurers to free Web sites, offer individuals or families the option of creating records that they control.

The programs range from simple electronic diaries to more comprehensive programs that link with doctors or hospitals for downloading of formal e-charts.

It's an evolution still in the early stages, and no one knows what features will prove most valuable to patients, cautions Stephen Downs of the Robert Wood Johnson Foundation.

"Diet and sleep and pain symptoms. When you actually took your medications. Did you take them?" lists Downs. "This information is really quite important" but many personal health records until now have "given short shrift to that."

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