By Christopher J. Gearon
Special to The Washington Post
Tuesday, March 15, 2005; Page HE01

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.

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.

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.

Laxor subscribers, like those of most PHR systems, enter conditions, treatments, medications, allergies and other information via Web-based forms. Blood pressure readings, doctor visits and test results can be included, and the Laxor PHR can remind patients of appointments or screening tests.

Unlike other PHR products, Laxor employs personal health information managers to help subscribers set up a PHR and deal with physicians or providers.

FollowMe, a service that's been around for almost five years, is a PHR pioneer. In addition to the usual PHR features, FollowMe includes an e-mail account and a printable emergency card with photo and direct links to information sources like the National Library of Science's MedlinePlus. Members can also store scans and labs, and upload documents.

CapMed calls its PHR product "a medical Quicken" because of its similarities to the popular personal finance software. Unlike Web-based products, CapMed sits on a user's computer and saves medical records via a portable flash drive (which can be linked to most personal computers of recent vintage) or CD. Users can share them with whomever they wish.

WebMD's Health Manager service offers numerous whistles and bells. Subscribers' pages can include health news, content and tools customized to their conditions and interests. Subscribers can compare drug costs based on their insurance coverage or download data from medical devices such as an EKG machine. WebMD's PHR can translate medical codes into plain language.

The biggest challenges facing PHRs include doctors themselves and privacy issues. Providers have been slow to accept computerized versions of patient-organized records, experts note. Lack of technical sophistication among some doctors also can be a problem. Odio says her endocrinologist's office doesn't have a computer that accesses the Web, for instance.

A Harris Poll released last summer showed that two in five adults keep personal or family health records in one place (not necessarily on a computer). More than 80 percent of those who didn't have a personal or family health record believe having one is a good idea.

Still, one in four people surveyed said they have privacy concerns and would not use a PHR as a result.

"There are direct impacts that can flow from access to medical records," said Marc Rotenberg, executive director of the Electronic Privacy Information Center, a public interest research center in the District. Medical information can play into hiring and promotion decisions, for example. But such information can be misused regardless of whether obtained electronically or via paper, privacy experts say.

Nonetheless, concerns about the security of personal health data are legitimate. In 2003, a hacker used a Web page found during a Google search to access a Drexel University College of Medicine database containing addresses, phone numbers and medical records of 5,500 neurosurgical patients. Another hacker downloaded confidential records of some 5,000 University of Washington Medical Center patients in 2000.

Provider- or institution-based EMRs may be more vulnerable than PHRs, most of which incorporate security and privacy controls similar to those used in online banking, according to Laxor's Barbash.

Legal issues over medical privacy need to be sorted out, too.

"A very big part in efforts to improve medical privacy is that patients have a right to access their own medical records," Rotenberg said. Under the federal Health Insurance Portability and Accountability Act (HIPAA), consumers recently gained rights to access and exercise increased control over their medical records. But the laws aren't without holes.

"Our health care system needs [computerized medical records] desperately," said Emily Stewart, a policy analyst with the Health Privacy Project, a D.C.-based nonprofit dedicated to raising public awareness of health privacy issues. "But in order for this to work, consumers' privacy fears need to be addressed."

Cynthia Solomon of Sonoma, Calif., spent years lugging her son's paper records and brain scans to different doctors. Her son, now in his twenties, has hydrocephalus, excess accumulation of fluid in the brain. Shunts drain the fluid but are prone to failure.

Several years ago, Solomon hit the breaking point with the inefficiency and burden of paper records. She took out a second mortgage, tapped software programmers and developed an electronic medical record for her son that could be accessed by any doctor with Web access. That program was the prototype for the FollowMe PHR service.

As CEO of Access Strategies Inc., Solomon has moved on to creating digital medical records for targeted populations. In development are PHR products tailored around multiple sclerosis, Parkinson's disease, Huntington's disease and Lou Gehrig's disease. Another is for the unique needs of migrant workers.

"If migrant farm workers can have a PHR," Solomon says, "anyone can."•

Christopher J. Gearon, whose recent work has appeared in Kiplinger's and U.S. News and World Report, last wrote for the Health section about individual health insurance policies.