e-health enables more personalized medicine; group fights for digital patient rights

Jun 23 2009

Tonia Odom, a 35-year-old patient with rheumatoid arthritis, a sick father and a young son, each of whom has multiple health problems, has found some relief to the problems of managing her families' array of illnesses in at a Duke University clinic that's a model of the "medical home" approach to medicine, the New York Times reports.

"As President Obama and Congress try to create a national system that provides better care for more people at lower cost, you are likely to hear a lot more about this idea. The term, coined by the American Academy of Pediatrics in 1967, is admittedly confusing. It does not mean a return to house calls. Nor need it apply only to people with complex health problems like those of the Odom family."

"Rather, it is an approach in which each person has a primary care doctor who heads a team of professionals - perhaps including a physician assistant, a nurse practitioner, a dietitian, a social worker and a pharmacist - to provide round-the-clock access to care."

One attribute that makes the "medical home" approach so successful for patients like the Odoms is the use of electronic medical records to coordinate care between their primary care doctor and the specialists required to treat their diagnoses that range from a seizure disorder and sleep apnea to kidney failure and the arthritis. In addition, Tonia Odom is able to access the "clinic's online health portal to get the family's medical information, make appointments and check the lab results..." (Brody, 6/22).

Meanwhile, as more and more health providers are using digital tools to provide care - something the Obama administration has pressed for - a small coalition of software companies, doctors, bloggers and others "is seeking to firmly inject the rights of patients" in the e-health landscape, the New York Times' blog, Bits, reports. The group, which includes Microsoft, launched a Web site yesterday, HealthDataRights.org, to further its cause. The group wants the administration to ensure that patients have a legal right to control and ownership of their health information, and that health data will enable patients to "take a more active role in managing their own health" (Lohr, 6/22).