Taking control of your medical information

Last week, I posted an item about how more IT in the medical centers is not necessarily the same as better information. As it turns out, there is an alternative to the hospital-centered and controlled system. A story in this morning’s Washington Post, “A Personal Record,” describes the emergence of personal health records (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.

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.

PHRs are not without problems. The article raises privacy concerns, which are also a concern with the EMRs. A greater concern to me is the proliferation of types of systems and means of access. If the doctors can’t quickly and easily access the information, the systems are useless. We would be back to all the flaws of the EMRs, as discussed in the earlier postings. However, if the health plans are involved in the systems, one can reasonable expect some form of technical standards to solve the interface problem (as the engineers would say).
In any event, the growth of these systems shows both the need for better information and the alternative to the hospital-controlled system.

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