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A Personal Record

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.


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)

_____From The Post_____
Personal Health Record Options

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.

Privacy, Please

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."

Next Steps

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.


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