Consumer Engagement in Developing Electronic Health Information Systems

While investing in health information technology (IT) can provide value to providers and administrative staff, the full value of health IT cannot be realized without the participation of the ultimate beneficiaries--the patients and consumers. Health IT has the potential to reduce health care disparities, increase consumer self-care, and provide a coordinated, patient-centered experience. However, existing literature indicates consumers have a distrust of some health IT efforts. Therefore, understanding the best way to engage patients and consumers and involving them in the planning, development, and implementation of any of the broad spectrum of health IT systems and tools spanning from clinical decision support to health information exchange (HIE) systems will lead to increased trust and enhanced systems.

This research study is designed to gain insight into consumers' understanding, fears, and concerns related to health IT and HIE in order to devise strategies to engage them in the development of electronic health information systems. Twenty focus groups with health care consumers were conducted in selected cities around the United States, including four conducted with Spanish-speaking patients. Groups were organized by several predefined characteristics that may influence their perception of the potential benefits and risks of health IT, such as a person's frequency of visiting health providers and whether a person receives insurance coverage from a health maintenance organization. The focus group discussions provided insight from consumers on a number of topics, including privacy, perception of benefits of using health IT, and the consumer role in developing health IT.

Overall, participants expressed optimism toward the use of technology. The benefits they most readily recognized included the potential to improve efficiency of providers and reduce duplicative tests. Privacy was a consistent concern across the groups, and there was support for the idea that health care consumers be asked for their consent before health data are stored electronically. The consumer role in designing health IT and using consumer-focused health IT, such as personal health records, was not immediately identifiable for many participants. This and other findings from the focus groups suggest the need for public education on the topic of health IT.