A Kentucky RHIO seeks community insights about EHR adoption.
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| Barbara Cox |
When the Louisville (Ky.) Health Information Exchange (LouHIE) considered forming a health record banking service, it sought the guidance of potential users—the Greater Louisville area community. LouHIE’s board of directors commissioned a research study of attitudes toward the service, hoping to learn about consumers’ health care interests, benefits, concerns and payment choices. The findings would guide the development of a business plan to drive consumer adoption of electronic health records. Launched at the annual Kentucky State Fair, the research initiative drew on phone, Web and paper surveys of consumer opinions.
Privacy and Security Top Concerns
While consumers expressed several concerns about EHRs and the health record bank, their primary worries boiled down to trust. They were concerned about the potential for identify theft, corporate misuse of information, and security and privacy, and they wanted a trusted environment for health information exchange. Consumers added that their confidence would grow over time with the organization’s continued dedication to and reinvestment in the community.
Community members noted that an individual’s health information is considered deeply personal and private, and they expected LouHIE to provide appropriate levels of security against intrusion or unauthorized use. The research team found that consumers were very concerned about being harmed by individuals who inappropriately accessed their medical information. Similarly, community organizations expressed commensurate concerns about potential liabilities from privacy violations or uncontrolled personal health information sharing.
The majority of the community felt that a nonprofit community organization would be more likely to maintain focus on the mission of improving patient safety and quality and decreasing costs than would a government organization or a private-sector entity concerned with shareholder value. In addition, the researchers found that community members wanted the health record banking service to be accessible to all consumers, especially low-income, uninsured and underinsured people who could most benefit from its services.
As community members became comfortable with the idea that a trustworthy, nonprofit organization could operate the service, they began focusing on the service’s potential benefits and costs. As a general rule, the community indicated that a health record bank would facilitate greater patient safety, better care quality and reduced health care costs. Consumers also noted that the health record bank would provide “peace of mind,” because they wouldn’t have to rely on their memory when explaining their health history to their care providers. They strongly agreed that if their physician recommended the service, they would be much more likely to use it.
Users Want Options
Consumer choice emerged as another key theme in the research findings. Community members wanted to control access to their health information, decide whether or not to participate in various research programs, determine whether personalized messaging added value, and choose the types of services they wanted to use, such as wellness, diet or heart programs.
The findings also revealed that community members highly value communication. They requested a communication strategy that included public service announcements and other modes of communication to keep the community informed. They also suggested implementing a benefits reporting process to regularly assess the value derived from the electronic health record and communicate that value to the community. Regular surveys gauging the community’s interest were another suggestion. Community members also proposed that LouHIE adopt a community outreach program to link trusted parties, such as physicians, hospitals and public health agencies, to spread the word about its services. Finally, the research confirmed that the health record bank’s board structure should continue to include representation from the entire community, including consumers.
Continued Community Engagement
As LouHIE moves into other phases of implementation, it intends to regularly request users’ input in determining and designing future services. With a mission to improve health care quality and patient safety and to contain costs for the benefit of all stakeholders, LouHIE’s success rests on community members’ trust and support.
Barbara Cox is a senior principal and senior researcher with the Noblis Center for Health Innovation, Falls Church, Va., a non-profit advisory group to health providers. Portions of the LouHIE research report can be downloaded here.
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This article first appeared on July 2, 2008 in HHN's Magazine online site.
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