Literature Review and Environmental Scan: Evaluation of Personal Health Records Pilots for Fee-for-Service Medicare Enrollees. Chapter 6: Standards for Personal Health Records


Standards for PHRs are a set of rules that ensure that personal health information can be easily stored, accessed, shared, exchanged, and understood by health care providers, payers, regulators, and consumers.[135] Standards have been recognized as the ‘key to realizing the value of PHR technology.’[136] They not only enforce a common language and architecture for storing and displaying health information, but they also provide the framework for health information exchange. While a number of standards for PHRs are currently available or under development, there are also notable gaps in the PHR standards development space.

The goals of this chapter are three-fold: (1) to describe the current standards for PHRs with respect to interoperability, security, privacy, and portability; (2) to highlight the gaps in standards development activities; and (3) to identify the challenges and issues associated with developing and implementing standards for PHRs.

We begin by providing an overview of the standards development community, identifying the stakeholders in PHR standards development, and discussing the current methods used to develop standards. Then, we provide a discussion of the key PHR standards with respect to interoperability, security, privacy, and portability. For each of the four standards categories, we describe the current standards available, identify gaps, and discuss relevant issues and/or challenges with respect to implementing the standards. We move on to discuss other gaps in standards development, highlight areas of overlap in the current standards development arena, and review relevant international standards development efforts. Finally, we close the chapter with our concluding thoughts, list of best practices, and recommendations for moving forward.

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