Standards Affecting PHRs/Portals
Patient portal content relies on content of electronic health records (EHR) and, for this reason, the standards that inform EHRs also inform portals. Portal user interfaces, however, have been shown to be a significant obstacle to portal use. Third-party development in portals is typically not permitted by vendors (Baldwin, Singh, Sittig, & Giardina, 2017), but as noted above, recent updates to ONC’s Health IT Certification Program are expected to smooth the way (Office of the National Coordinator, n.d.). For one example of an open platform supporting app development drawing on EHR content, see SMART Health IT at https://smarthealthit.org. For an example of a standards framework for health IT, investigate FHIR at Fast Healthcare Interoperability Resources: hl7.org/fhir.
While PHR vendors can use various proprietary formats that are not inspectable from the outside, there are also open standards used to organize the data in these products. Roehrs, da Costa, Righi, and de Oliveira (2017) point to standards in nomenclature and terminology (e.g., the Unified Medical Language System; see Part I, Chapter 3); privacy (e.g., HIPAA); structure and semantics (e.g., the Health Level 7 or HL7 family of standards); and templates and technology platforms (e.g., OpenMRS at openMRS.org).
Key Standards Organizations and Resources for Standards Development in Healthcare
HL7 (www.hl7.org): This ANSI-accredited, not-for-profit organization develops frameworks and standards for “exchange, integration, sharing, and retrieval of electronic health information.” Members are drawn from more than 50 countries and include stakeholders not only from healthcare but the government, the pharmaceutical industry, vendors, and consultants.
Office of the National Coordinator of Health IT (ONC) (www.healthit.gov): Mandated through the Health Information Technology for Economic and Clinical Health Act (HITECH Act) of 2009, ONC is “the principal federal entity charged with coordination of nationwide efforts to implement and use the most advanced health information technology and the electronic exchange of health information.”