This survey examines public opinions on the potential and privacy considerations of individually controlled electronic personal health records (PHRs). It was the first national survey to explore consumer perceptions about PHRs in the context of the entrance of Google, Intuit, Microsoft, Revolution Health and WebMD in the marketplace, and to measure perceptions of the importance of privacy practices in consumers’ decision to adopt such services. The results document firm attitudes in a majority of adults surveyed regarding privacy practices in the unfolding world of online PHR services. Among the findings:
- High perception of value: Regardless of their interest in using an online PHR service, 79 percent or more of the public believe using an online PHR would provide major benefits to individuals in managing their health and health care services.
- High interest: Almost half of the public 46.5 percent say they would be interested in using an online PHR service. This represents about 106 million adults.
- Privacy concerns: Among those saying they are not interested, 56.8 percent cited worries about privacy and confidentiality as a reason for their reluctance.
- Practices matter: By majorities ranging from 87 percent to 92 percent, the public feels that provision of six privacy, record-access, and user remedies would be either “essential” or a significant factor in their decisions whether to join an online PHR service. More than 90 percent said their express agreement should be required for each use of their information.
- Utilization of electronic PHRs remains low: Only 2.7 percent of adults have an electronic PHR today (representing about 6.1 million persons). Most (57.3 percent) do not keep any form of personal health records, and 40 percent keep some paper health records.
- Variations by sponsor: Interest in using a PHR online service varies according to the PHR service’s sponsoring organization, with the health care services individuals now use or have available locally rating most highly.
- Variety of enforcement: When asked about enforcement of privacy policies, more than 75 percent of the respondents considered each of the following to be useful: market forces, new federal health privacy law, action by the Federal Trade Commission and state attorneys general, and independent organizational-compliance audits.
Public attitudes strongly support the need for a comprehensive approach to privacy practices and consumer control in emerging internet-based PHRs and related services. Most consumers see a wide variety of potential benefits; they strongly favor a set of privacy and information access practices, and they view at least four different enforcement mechanisms as being effective.
