Personal health records (PHRs) are electronic medical records whose contents are controlled and managed by the consumers whose data they carry. PHRs have attracted much press attention in recent years, and both industry and governments in many countries see them as potential solutions to many IT problems in health care. The National Library of Medicine (NLM) is developing a PHR in order to study and improve PHR systems utility, reduce the barriers to their use, identify best practices, and provide a platform and test bed for advanced applications. The PHR structure is based on a set of existing messaging and vocabulary standards that are supported by the Department of Health and Human Services and the NLM, and its development is based on both publicly available open-source software (Ruby on Rails, Scriptaculous, and jQuery) and software developed at NLM which will be released as open-source, and could have broad applicability to electronic medical record software. The PHR is a web application that uses an internally developed forms generator with rule-based skip logic (e.g., if the person is male, it does not ask about pregnancy history), data validation checks and auto-complete input. It uses AJAX techniques to communicate with the server, so the response time is very fast. The NLM PHR can manage clinical information for many different family members under one account;for example, a mother can maintain immunization records for herself and each of her children, and also keep track of her ailing father's medications. Users can record medications, medical problems, surgeries, immunizations, and important measurements such as blood pressure and laboratory results (e.g., hemoglobin or cholesterol). The major clinical variables included in the PHR--e.g., drugs, problems, surgeries, immunizations are mapped to federally-supported standard coding systems: Drugs are mapped to RxTerms (a subset of RxNorm that was developed for this project, measurements are mapped to Logical Observation Identifiers Names and Codes (LOINC) also required by regulators, immunizations are mapped to the Centers for Disease Control's vaccine CVX codes, and diagnoses and procedures are mapped to Systematized Nomenclature of MedicineClinical Terms (SNOMED-CT). All of which are required for use in electronic messages by federal regulators. The PHR adopts Health Level 7 (HL7) standards for much of its data structure and all of its data types, which will facilitate the import and export of clinical data. Automatic coding in the NLM PHR provides three special capabilities: 1) custom clinical decision support;2) one-click access to health information about coded concepts entered in the PHR, and 3) identification of duplicate prescribing with different but equivalent drugs. Accomplishments and new features added in FY2012 include: o Substantial user testing and re-design of the user interface to reflect user need o Update of the consumer names for the medical conditions and surgeries and addition of common cosmetic procedures to the surgeries list o Addition of a feature that allows consumers to edit their flow sheet data directly o Creation of several new consumer health panels, including a pediatric developmental milestone tracker and seizure activity log o Complete revision of the consumer health panel classification system o Complete update and expansion of help text o In progress - capability for document upload documents (such as radiology or lab reports) in various formats o In progress - capability to track user usage statistics o Update of the Ruby on Rails platform to version 3.2 o Creation of a completely parallel system without sophisticated graphics interactions to accommodate assistive devices;so sightless individuals could use easily This project has been a longstanding NLM interest and is part of the NLM strategic plan. It uses and tunes the message and vocabulary standards that NLM has supported, and it will also provide another consumer entry point to NLM's rich trove of patient-oriented data. Early research projects will focus on users'needs, usability, and usage patterns to guide the next round of development and research. We are in the process of finalizing business associates, licensing, and terms of use agreements with Bethesdas Suburban Hospital (now a part of Johns Hopkins) in anticipation of Suburban Hospital installing and operating the NLM PHR as a service to people in the community and providing de-identified data to NLM for usability research and further software development.

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