Demolishing assumptions about patients and the PHR

When a medical practice in Florida decided to survey its patients about whether they’d be willing to use a personal health record offered by the practice, the doctors figured those most likely to say yes would be younger, well-educated and higher-income. They also hypothesized that the likely users would be more health-literate.

As it turned out, they were right – but only by half.

Income and schooling made no difference and neither did age. What seemed to matter most was the patient’s health literacy (or, to be more accurate, the patient’s perception of his or her level of health literacy). Among the patients in the survey who said they were willing to use a personal health record, 65 percent self-reported high health literacy. For those who weren’t willing to use a PHR, only 38 percent estimated their health literacy as high.

Overall, three out of four who responded to the survey said they’d be willing to adopt a personal health record if the medical practice made this service available to them.

The results of the survey appear in a recent edition of the Perspectives in Health Information Management journal, and they raise some interesting questions about the assumptions that often are made regarding patients and information technology – e.g. that older adults don’t go online or less-educated individuals aren’t very interested in a personal health record.

Even the researchers were a bit taken aback by their findings. Alice Noblin, Ph.D., an assistant professor and program director for the Health Informatics and Information Management Program at the University of Central Florida, told the AMA’s Medical News Today, “I knew going in that it was a high Medicaid population, so the demographics didn’t surprise me. But how they felt about the PHRs, yes, I thought they would be a lot more unwilling to get involved with it, but definitely, most of them were interested.”

To be sure, this was a small survey, involving only 562 patients at just one medical practice. Nor was it able to predict whether these patients would translate their willingness into action if an online personal health record became available to them.

One of the lessons, however, seems to be that the medical community shouldn’t take for granted that most of their patients are indifferent to technology – and they shouldn’t underestimate patient interest in PHRs either.

A couple of the more intriguing findings from the survey: More than half of the patients who participated in the survey had a high school education or less, yet 71 percent in this group said they were willing to use a personal health record. And although nearly 60 percent of the respondents were in the lowest income category ($20,000 a year or less), three-fourths of them were interested in using a PHR. Most of the survey participants also were middle-aged and older.

Now for another statistic: Nationally, use of personal health records has been placed at around 7 percent of the total patient population – a very low figure when you consider the extent to which people are using information technology in other areas of their lives.

It’s not clear why there hasn’t been more uptake. Some of this can be traced to people’s concerns about privacy and security; unlike the electronic medical records maintained by hospitals and medical practices, the personal health record is maintained by patients themselves. Some of it could be due to the amount of hunting and gathering often required for consumers to create a PHR that’s complete and accurate. Actual use also somewhat depends on the PHR’s design and whether it’s easy or cumbersome.

But much of it simply might be a result of a general lack of awareness and patient education. Would it help if medical practices took a greater lead in discussing and promoting the PHR with their patients?

This particular survey was commissioned by a medical practice that wanted to offer a PHR and wanted to gather some data before making a final decision. Although many health care professionals remain ambivalent about how much information should be placed in the hands of patients, this small study suggests patients are more receptive than providers might think – and furthermore, that patient interest cuts across the demographics of age, income and education. It remains to be seen how the gap between what patients say they want and what providers assume they want can somehow be narrowed.