“I want the computer to know who I am,” is the title of a research article in the June 2009 issue of the Journal of General Internal Medicine. This is also a fair statement for what’s wrong with so much in the current state of the art in health information systems.

The four authors, all associated with the great health institutions around Boston (Harvard, Beth Israel Deaconess Medical Center, Brigham and Women’s, and MIT), conducted eight focus groups with health citizens and professionals to learn about their perceptions of the role of PHRs and electronic health data.

They found that the insights of ‘regular people’ — that would be patients and health citizens overall — are “largely absent” from the medical literature and available products and services among current HIT offerings.

Some of the most interesting findings were that:

1. Most patients want full access to their medical records.

2. People recognize the benefits of remotely available medical records and balance the benefits against privacy concerns. Those who were healthy talked about privacy more than those with chronic illness.

3. Patients expect computers to foster more self-care in the future.

4. Patients expect new technologies to watch over them (e.g., smart homes that monitor environmental factors).

5. Patients envision a “truly personal computer.”

One of the surprising findings the authors write is that the “flattening world” has driven health citizens across gender, ethnicity, age and education toward converging opinions about computers in health.

Focus groups were conducted in four metro areas including Boston, MA; Portland, ME; Tampa, FL; and Denver, CO. These sites were chosen to be geographically represented of different communities with cultural diversity, as well as rural reach. Focus groups were comprised of people from different age cohorts and ethnicities.

Health Populi’s Hot Points: What is a “truly personal computer” in the eyes of Jane Doe? People want the computer to know who I am, one respondent said. The point is that people demand that computers deliver them personalized, individualized, highly relevant health information. Most Americans have experience in “Paging Dr. Google,” engaging in health searching that yields reams of printouts that are more general and less about ‘me.’ Consumers in this study talked about computers as personalized health coaches.

Despite the limitations of this study — sample size, geographies limited to 4 metros, the age of the data (11/2006-January 2007), and the qualitative nature of a few focus groups –it raises the uber-point that the “P” in PHR is in a deficit — that health citizens should be more broadly included in the developing and piloting of PHRs and consumer-facing health information systems.

And, don’t forget, the “P” also stands for privacy — the individual’s control over her PHI.

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