The emergence of the e-patient

 The National Library of Medicine wants to be part of the conversation on “e-patients.” So it made sense to Dr. Donald Lindberg, director of the library, to co-sponsor an e-patient conference on April 6 and April 7 on the National Institutes of Health campus in Bethesda. The event brought in experts and patients who are using social media tools and other health IT applications to help manage their care.

“I was struck by the patients going after the information on the Internet. They deem themselves e-patients,” Lindberg told me. “Call if chat groups or whatever, the patients get helpful information from each other.”

The focus of the e-patient conference was on personal health records and personalized health care, Lundberg said. The national library can help with developing technical and vocabulary standards in those areas, he said.

What else should government do? I asked him.

“It should stand back,” Lindberg said.

I could not help noticing that relatively few vendors appeared to attend the event, in contrast to other recent well-attended health IT conferences. I asked Dr. Andrew Balas, board member of the Friends of the National Library of Medicine, also a co-sponsor of the event, whether vendors were more interested in electronic health records (EHRs), rather than personal health records (PHRs).

EHRs are used by doctors’ offices and institutions, while PHRs are used by patients to access their own records. The bulk of the $20 billion in economic stimulus law funding goes for EHRs.

Balas said personalized health care covers more than just PHRs. It is a set of technologies, including genomics, that allows for personalized care. And there also is some convergence with PHRs and EHRs, he added.

“You can talk about PHRs, or EHRs, or about patient access to EHRs,” Balas said.