“It should be done in the beginning. We should be in the design. I want to know from the get-go.”

“I think by the time you’re getting involved in the process, it’s already leaped over you and gone down the highway, and you’re behind.”
“We all know that it is going to steamroll over all of us.”

These three comments represent the continuum of consumer perspectives on health IT design. These real-life statements come out of the results of 20 focus groups conducted by the Agency for Health Care Research and Quality on the topic of Consumer Engagement in Development Electronic Health Information Systems. AHRQ met with citizens in five geographic regions to gain a balanced perspective of diverse health consumers. Four sessions were conducted in Spanish.

AHRQ conducted this research to explore views of American health citizens and health IT in the context of the ARRA’s investment in accelerating the adoption of EHRs.

The AHRQ focus groups covered a wide range of HIT issues including the role and impact of health IT on patients and providers, security and privacy (including the use of patient data in research), the use of personal data for managing public health, patients’ use of personal health records, and other topics.

Overall, AHRQ concluded that Americans are generally optimistic that HIT could benefit health care quality and efficiency. Some participants, nonetheless, are worried that HIT could make health care more impersonal and less patient-focused. Many people would like their health information to be kept in paper format.

AHRQ found that a “large proportion” of consumers initially thought that they should not help to determine how HIT is designed and used — that this is the domain of “experts in medicine and computers,” and that the average citizen lacks the knowledge needed to address HIT. Many consumers said they didn’t understand how decisions were made on the design and use of HIT.

Importantly, after deeper discussion, AHRQ notes that participants tended to feel they needed to have a say in HIT to protect privacy of personal health information.

The general feeling was that insurance companies should not play a ‘dominant’ role in deciding how HIT was designed and used. Health citizens also have a mixed view on the role of government when it comes to HIT.

Health Populi’s Hot Points: AHRQ concludes that the “results of the focus groups suggest that public education about health IT is needed.”

Issue #1 for American health citizens appears to be privacy and security of personal health information. Notwithstanding the presence of HIPAA — forms for which Americans have been signing for the better part of a decade — Americans continue to be concerned about the potential for misuse of their data by health plans, employers and market research organizations.

Issue #2 is a feeling if dis-empowerment when it comes to power and control over health care. There’s a sense of confusion about how individuals can influence health decisions.

Together, these two findings suggest that a great many Americans are dis-engaged from their own health care — their information, their decisions, over their own personal care. How to invigorate the public’s sense of involvement in health information and health care? Yes, AHRQ, public education — but let’s make sure it’s actionable and relevant.

The results of the AHRQ focus groups don’t bode well for getting people motivated about their health care, health reform, and the public’s health, at least for the short term.

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