What do patients want from health information technology?

People hope technology will transform their healthcare the same way the Internet has changed other parts of their lives, by opening up information and personalizing their interactions, Boston researchers say in an article that adds patients' voices to the national debate about health information technology.

Jan Walker of Beth Israel Deaconess Medical Center and colleagues from Brigham and Women's Hospital, Harvard Medical School, and MIT asked focus groups in four American cities what they want from technology as it related to healthcare now and in the future. Their report is in the June issue of the Journal of General Internal Medicine. The study was funded by the Robert Wood Johnson Foundation.

The 82 participants -- frequent Internet users from Boston, Tampa, Denver, and Portland, Maine, divided into six patient and two doctor groups -- said they want access to their health records, ways to communicate with clinicians, and home monitoring to manage their illnesses. Patients were more willing to trade some privacy for having their health data available in case of emergency, compared to health professionals.

Patients also hoped to have enough information to care for themselves, if they entered a new symptom and received answers based on their medical history, avoiding a visit to their doctor for some problems.

"Consumers want personal health records to integrate their personal health information and preferences with the Internet, enabling them to find information targeted to their unique needs," the authors write. "They spoke time after time of having the computer know enough about them to filter out irrelevant or suspect information from the Internet, suggesting that the inability to sort through infinite information effectively is a major obstacle that prevents patient from becoming more proactive in their care."

Or, as one patient put it:

"I want the computer to know who I am."