AHRQ: Consumers want a say in health IT privacy, security

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Healthcare consumers believe they should have a say about the development of health IT systems in order to protect the security and privacy of their own medical information, according to a report prepared for the Agency for Healthcare Research and Quality (AHRQ) of the U.S. Department of Health and Human Services.

For purposes of the project, a total of 20 focus groups were conducted—four groups in each of five geographic regions of the United States—with the objective of exploring the views of healthcare consumers about their roles in determining how health IT is designed and used. The groups, according to the report’s authors, were designed to gather opinions from diverse sections of the U.S. population—for example, four of the focus groups were conducted in Spanish and two were held in rural, medically underserved areas.

The first hour of each focus group was spent educating the participants about health IT so that participants could knowledgeably discuss their role in influencing the design and use of health IT

The authors wrote that a large number of participants originally thought they did not have the expertise necessary to help determine how health IT was designed and used, and that it was “the domain of experts in medicine and computers.”

But, the issues of privacy and security were the main concerns of a large majority of the participants, and they felt they “owned their data and needed a role in ensuring those data were secure and used only in ways that they authorized.” They also had concerns about unauthorized persons getting access to their information and that the information could be used for purposes other than to provide care.

The consumers felt that health insurers should not play a dominant role in health IT development, but were conflicted about the government’s role. As far as their own roles, while participants in the focus groups thought consumers should have a role, they were confused as to how that should happen.

While participants did not spontaneously mention that consumers could serve on hospital or other provider IT advisory boards, when moderators of the groups mentioned the idea the participants voiced support, according to the authors. They did not support the idea they should work with IT vendors to help design the technology, and also expressed the view that organizations such as the American Heart Association (AHA) or the AARP should not speak for them, reasoning these groups did not necessarily represent their interests.

The report concluded that there needs to be an effort to educate the public about health IT, and this effort should address how health IT will affect the experiences of all healthcare consumers and how consumers can have influence how IT is designed, developed and used.