Health Care Consumers’ Preferences Around Health Information Exchange

I was very interested to read about consumers' preferences concerning health information in the article "Health Care Consumers' Preferences Around Health Information Exchange." It appears, based upon the data reported in this article, that most of the consumers surveyed preferred a high level of control over electronic storage and dissemination of their health information. However, I suspect this high preference for control is due to most consumers' lack of familiarity and comfort with health information exchange when this survey was conducted.

The survey data reported in this article was collected in 2008, which is very early in the widespread adoption of electronic health records in the United States. Because consumers have had limited experience with electronic storage and sharing of their health information they may be concerned about potential abuses and breaches of their health data. I expect as consumers become more accustomed to the use of electronic health records they will also become more comfortable and trusting of the use of these information systems to effectively record and share their health information in coordinating their health care. It will be important for researchers to move beyond cross-sectional one-point-in-time surveys of public attitudes toward electronic health information systems, moving towards more longitudinal repeated administration surveys that track changes in attitudes towards health information systems over time. For example, the Health Information National Trends Survey, conducted by the National Cancer Institute, collects data from the American public every few years to track the diffusion of health information in society and identify changes in the ways the public accesses and uses health information.

As the diffusion of electronic health records becomes a commonly adopted part of modern health care systems I predict that consumers will become less wary about potential misuse of their health information and will opt for more automated collection and dissemination strategies for their health information. I expect that most consumers will probably find that close control over the collection and dissemination of health information can become very time consuming and cumbersome.

However, a more critical current issue with the use of health information systems than consumer control, is consumer access to and understanding of their own health information. It is most important for consumers to have easy access and ownership of their health information, as well as to get support in making sense of their health information. In current practice, it appears that health care delivery systems have assumed ownership of health records and often restrict consumer access to their own health data. This limits consumers' abilities to participate actively in health care decision making and in directing their own care. Provisions need to be made to make sure that consumers have easy access to their health data, as well as to needed support for interpreting, evaluating, and making sense of these data to support active and informed health decision making.

Competing interests:   None declared