Consortium backs framework for personal health records

A broad consortium of public and private health care stakeholders has developed and endorsed a policy-and-technology framework for personal health records. The set of common practices, developed during the past 18 months and unveiled Wednesday, seeks to protect the privacy of electronic health data and guarantee consumers’ control of those records.

Consumers will not use electronic health records if they don’t have confidence that they are safe, secure and easy to use, said Zöe Baird, president of the Markle Foundation, which leads Connecting for Health, a collaborative that represents more than 100 groups across the health care spectrum.

Organizations that have endorsed the framework include Microsoft, Google, the Veterans Affairs Department, Center for Democracy and Technology, AARP, Aetna and BlueCross BlueShield Association.

“Consumer demand for electronic personal health records and online health services will take off when consumers trust that personal information will be protected, Baird said.

The framework includes a number of technology components such as sound authentication practices, which the consortium considers the cornerstone of information security. Other components endorsed by the group include audit trails of users' accounts, data and policy consents; limitations on identifying information; and data portability requirements that let users download, transfer and compile health information from multiple sources.

The framework’s recommendations include consumer-friendly policy notices, rigorous consumer consent provisions, chain-of-trust agreements that disallow unauthorized use of information, mandatory notification of security breaches or misuse of data and mechanisms for resolving disputes.

The framework does not include specific enforcement provisions.

Underscoring its contention that consumer confidence is crucial to the broad adoption of personal health records, the Markle Foundation released results of a survey showing that 4 of every 5 people in the United States believe such records would help people verify the accuracy of their health data, track health-related expenses, avoid duplicated tests and procedures, keep their doctors informed of health issues, and get treatments tailored to their health needs.

Nearly half of survey participants said they had an interest in using electronic health records. Among respondents who reported a lack of interest, privacy concerns were the most frequently cited reason.

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