Consumers Lack Critical Information About Value of Health IT

A new report prepared by an outside research group for the Agency for Healthcare Research and Quality, or AHRQ, suggests that American consumers are ripe for education about health information technology, or health IT.

Even as the federal government is investing a considerable amount of money and energy to urge physicians to implement electronic health records, or EHRs, in their practices, the report, Consumer Engagement in Developing Electronic Health Information Systems, (75-page PDF; About PDFs) indicates that the general public doesn't understand the value health IT brings to the health care table or to their personal health care experiences.

Nor did many of the participants in the 20 focus groups conducted nationwide by the researchers understand how decisions about health IT policy are made or the role that they as consumers could play in formulating regulations that directly affect them.

That could be a problem, concluded the reports' authors, because Congress has allocated billions of dollars in the American Reinvestment and Recovery Act of 2009 to expand health IT.

"Conceivably, the lack of (consumer) knowledge could pose a challenge to the success of ongoing health IT efforts," said the authors.

Sid Schneider, Ph.D., is a researcher at Westat, an employee-owned research corporation based in Rockville, Md., that was commissioned by AHRQ to conduct the research. He told AAFP News Now that focus group facilitators spent about an hour at the beginning of each session talking to participants about how computers are used in health care.

After people had sufficient information to begin thinking critically about health IT issues, researchers turned to the topic they were most interested in addressing -- namely, who is going to make decisions about how health IT is designed and implemented and what role patients can play, said Schneider.

Generally, the researchers concluded that many of the participants had a basic understanding of health IT. Participants thought technology would benefit the quality of health care, make health care more efficient and reduce medical errors.

Although that input was encouraging, Schneider said he noted a disturbing trend. "What was most surprising to me personally was the almost complete lack of understanding that this new technology ushers in a new age where patients and providers collaborate more than they ever have before," said Schneider.

And although it wasn't universal, a number of respondents "still see this episodic model of health care with an expert and a passive recipient," said Schneider, adding, "I did not hear anyone say, 'I have this chronic condition, and with health IT, my doctor will have better data and I can be involved in the decision making.'"

The number one health IT issue discussed by focus group participants was the privacy and security of their health records, a concern that has been well documented in previous research, said Schneider.

Many participants thought they owned their health records. They were concerned about computer hackers and the possibility that their personal health information would be shared or used inappropriately.

"There is a fairly widespread suspicion that health information is not kept secure by existing health IT products," said Schneider.

However, there was a clear lack of understanding about the process by which decisions on health IT -- including privacy issues -- are made and, in particular, the role of state and federal governments. For example, Schneider said there was no mention in the focus groups of the office of national coordinator for health IT, a federal position established in 2004 to lead the country's health care system into an electronic future.

And although participants didn't fully understand how consumers might begin to take part in decision making -- by serving on advisory bodies, for example -- many voiced support for the idea after it was introduced by a moderator.

In addition, many participants also indicated that

Based on the qualitative research gleaned from focus group participants, the report authors concluded that many people don't understand the emphasis on health IT in the health reform debate, and they "may not perceive health IT as a central issue in the ongoing health care debate outside of the narrow area of data security and privacy."

Schneider said "patients need to be involved in the design and implementation of health IT if only to avoid suspicions on the part of patients that the technology is being misused."

He stressed that the focus group participants were "thinking on their feet" and hadn't worked through many of the consumer issues connected to health IT.

Moreover, said Schneider, consumers were unsure about what their role should be in health IT decision-making. "But there was certainly, absolutely in all the groups, a strong realization, of 'Oh dear, this could go terribly wrong if we don't have a say in this right away.'"