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Tests to track value of getting electronic handle on records


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, or PHRs, actually 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 PHR programs varies widely, and a good one is supposed to be more than a static repository.

Say someone with hypertension starts listing morning blood pressure in a PHR 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-mails 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 Dr. Peggy Wagner of the Medical College of Georgia, who is leading one of the studies. PHRs may be “changing what it means to be a patient.”

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

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

Yet just having a PHR 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 Dr. Jon White, health technology chief for the U.S. Agency for Healthcare Research and Quality.

So his agency is funding four unique projects around the country – in California, Georgia, Iowa and Virginia – to compare whether patients randomly assigned to use strong PHRs 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 PHR that links directly to the health system’s own records plus allowing patients to record daily blood pressure, diet and other lifestyle factors and e-mail doctors.

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

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

“It’s always something that’s changed,” says Moore, who prints his PHR 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.

While large hospital and insurance networks are making the switch, few private doctors have. And even then, software differences mean one doctor’s system can’t always share information with another’s.

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

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

It’s an evolution still in early stages, and no one yet knows what features will prove most valuable to patients, cautions Stephen Downs of the Robert Wood Johnson Foundation. His nonprofit agency has numerous projects under way to design more user-friendly PHRs.

“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 PHRs until now have “given short shrift to that.”

Lauran Neergaard covers health and medical issues for The Associated Press in Washington.

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