Personal health records: What's the status now?

February 17, 2006

PHRs are proliferating, and for good reason. They help patients take charge of their health.

Maurice Perreault of Bellingham, WA, took 12 medications for conditions that included diabetes, congestive heart failure, renal failure, and hypertension.

"God forbid if he had dropped his pill box on the floor," says his daughter Bonnie Parten.

Together with her mother and four siblings, Parten helped manage her father's care until he died in 2004 at age 80. A dozen different pills is a lot to remember, but family members made sure that every doctor treating Perreault knew exactly what he was taking, thanks to an online health record that they maintained for him and shared with clinicians.

Perreault's experience was partly what President Bush had in mind when he declared in 2004 that every American should have an electronic personal health record (PHR) within 10 years. The PHR is one element of the federal government's grand vision of a national health information network linking doctors, hospitals, and patients.

Momentum toward Bush's PHR goal is definitely building. Sixty percent of Americans favor creating online PHRs provided that their understandable concerns about security are addressed, according to a survey released last October by the Markle Foundation. CMS wants to promote PHR usage by Medicare and Medicaid patients. And Hurricane Katrina, which destroyed untold thousands of paper records, has given the movement an added sense of urgency.

PHRs mix and match consumer, doctor input

Several types of PHRs are emerging. One kind is a record like Perreault's that patients and caretakers build themselves. Just last year, a physician-patient communication service called Medem launched a consumer-created PHR called the iHealthRecord and it already has 40,000 users. Most of these PHRs are linked to Medem-built physician websites that allow doctors to communicate online with patients.

IBM recently announced that it'll create a similar PHR for each of its 100,000 employees, but with a twist. Besides information that employees key in, the PHR will contain clinical information such as lab data from insurers and medication lists from IBM's pharmacy benefit manager.

Another version of the PHR relieves patients of the burden of data entry. They can view information about themselves that's extracted from their doctor's electronic health record and presented in layperson-friendly fashion on a website. Some 100,000 patients of Group Health Cooperative, a nonprofit healthcare system based in Seattle, have signed up for this kind of PHR. The site also lets them send secure messages to their doctors. Such interactive tools, along with links to patient education, are becoming standard features of PHRs.

For even more variety, traditional insurers such as Blue Cross and Blue Shield of Louisiana and Empire Blue Cross Blue Shield are beginning to create online PHRs for their insureds. Like the PHR at IBM, these contain clinical data derived from claims.

It's obvious that the world of PHRs is a young world, full of piecemeal experiments and questions that are unlikely to be answered soon: Will the average patient faithfully and accurately maintain a do-it-yourself PHR? And will doctors bother reading these PHRs? If they don't, it's feared that overlooking red-flag medical symptoms could increase their malpractice liability.

PHRs extracted from a doctor's EHR raise another set of questions: Will a patient be able to understand what he reads? How does a physician decide what portion of an EHR to share with the patient? How does information from another doctor get into the PHR? What happens if the patient changes doctors? How will his health information be transferred?