Carolyn Odio had a longtime wish granted for her 60th birthday: her very own online medical record.
The Herndon resident, who has diabetes and other medical conditions, now has a personal health record (PHR) on the Web. The site contains her long medical history, including diagnoses, symptoms and medications. She has scanned in doctors' notes, test results, CT images and insurance information. She's given her doctors a password so they can log on, and permission to share her records with other medical professionals and members of her family.
Andrew Barbash, chief medical officer of a Bethesda-based start-up firm called Laxor, says people are already managing their own medical records but don't realize it.
(Katherine Frey -- The Washington Post)
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Odio has a rare condition called situs inversus, in which a person's internal organs -- including the heart -- are located on the opposite side of where they sit in most people. Because she travels regularly and needs to see many physicians, she worries that an unfamiliar doctor trying to help her in an emergency might kill her instead.
So for her birthday, Odio asked her 20-year-old son, Samuel, to create a digital medical record for her. It took the computer whiz less than 30 minutes to create a secure Web page. Gathering and entering her medical information took much longer.
Now she feels safer. "I wanted to avoid medical mistakes happening to me," Odio said.
The nation's health care system is still based on paper and ink. A chaotic network of doctors, hospitals, clinics and other providers relies on telephones, fax machines, bicycle couriers and the U.S. mail to collect and transfer patient information.
While most consumers can retrieve cash from a bank account anywhere in the world, research virtually any topic instantly and buy books, sell unwanted stuff and take university courses online, the medical system is a laggard in information technology. Only 10 to 15 percent of U.S. hospitals and doctors can access patient records electronically -- and often they contain data from only a single provider or hospital.
According to the Institute of Medicine, more than 500,000 people are injured each year because of adverse drug events, many of which might be avoided if health care providers could get more information on the drugs their patients are taking. As many as 100,000 hospital patients die each year because of medical mistakes. One of every seven primary care visits is affected by missing medical information, leading to unnecessary costs to the system, as well as duplication or delays in care.
"The number one benefit of [computerized medical records] is a reduction in errors," said David Brailer, President Bush's national health information technology coordinator.
Brailer is working to build a national health information infrastructure that would permit doctors and hospitals to access a patient's complete medical record. In addition to reducing errors, he said, a secure system of computerized patient records would make the health care marketplace more efficient. It could improve clinical care, he said, and it would be a boon for tracking disease outbreaks and some acts of bioterrorism.
But even the biggest boosters of a national health information network concede it's a huge task that will take years to bear fruit. In the meantime, several firms have begun to offer PHRs, with prices starting at $44.95 for a CD or $24.95 for a year's subscription to a service. The field includes the huge Web operation WebMD and smaller players including FollowMe, CapMed, Vital Vault and a startup called Laxor.
The Rise of the PHR
Patient-owned PHRs differ from electronic medical records (EMRs), which are created and controlled largely by health care providers. (It's the EMR concept that the Bush administration is trying to expand.)
PHR sponsors, which include a growing number of health plans and hospitals, are betting that more Americans -- particularly those with chronic ailments and those who care for children and aging parents -- will soon demand digital, comprehensive medical records.
"People are already in the business of managing their health information. They just don't realize it," said Andrew Barbash, chief medical and information officer of Bethesda-based Laxor. He says doctors routinely rely on patients for symptoms, medical histories, medication status and other information. PHRs can ensure the information reaches providers whether the doctor asks for it or the patient remembers to provide it.
