Software in health care: health records, data standards and patient access

Health information technology concerns the computer systems used to manage and exchange health information. Wikipedia’s overview describes information management across computerized systems and exchange between patients, providers, payers and quality monitors. Its article on electronic health records describes a digital collection of patient and population information that can be shared between care settings. Recorded information may include medical history, diagnoses, medication and allergy information, laboratory results, imaging and billing details. These are descriptions of software and records, rather than claims that a particular system changes a person’s health.

This is general information, not medical advice.

The federal role in health-record software

Wikipedia’s account of the National Coordinator dates the office’s creation to April 27, 2004, and describes its role in coordinating national health-information technology and electronic exchange. The office’s official site presents its work around health data and technology. These functions concern the organization of information systems, standards and public policy. They are distinct from a description of the clinical contents of any individual record.

Wikipedia’s account of the HITECH Act describes the law enacted in 2009 and its incentives for meaningful use of certified electronic health records. Wikipedia’s account of the 21st Century Cures Act dates that law’s enactment to 2016 and describes its provisions concerning health-information exchange. ONC’s information-blocking explanation defines the practice as interference with access, exchange or use of electronic health information, subject to legal requirements and specified exceptions. Its explanation also distinguishes the actors covered by the rule and the knowledge standards that apply to them.

Standards for moving and describing information

Wikipedia describes HL7 as technical standards for exchanging health information between software applications. HL7’s FHIR overview explains a standard organized around resources: shared building blocks that define the content and structure of information. Resources can be combined, and the specification provides an extension mechanism for additional contents. Messaging and resource structures address how information is represented and transferred. They do not alone describe all the meanings of the clinical terms within a record.

The reference works distinguish other standards by their purpose. Wikipedia’s DICOM article describes digital storage and transmission of medical images and related information. Its LOINC article describes identifiers for laboratory observations and other clinical information. The National Library of Medicine describes SNOMED CT as clinical terminology and a designated standard for electronic exchange in federal systems. A record may involve image files, structured observations and clinical terms at the same time; the standards cover different parts of that information.

Public and open-source systems

Wikipedia describes the Department of Veterans Affairs’ VistA as a health-information system and states that its software is in the public domain. The VA Software Document Library supplies system documentation. Wikipedia describes OpenEMR as an electronic health-record and practice-management system licensed under the GNU General Public License. These are examples of software ownership and licensing arrangements. Public-domain status and an open-source license are different legal descriptions; neither supplies a comparison of clinical results.

Syzdykova and colleagues’ systematic review evaluated open-source electronic health-record systems for low-resource settings. The authors compared features including interoperability, access controls, coding systems, offline operation, customization and community support. Their assessment concerned requirements and constraints such as infrastructure and trained staff. It was a comparison of software features and suitability for those settings, rather than evidence that an open-source license itself produces a clinical benefit.

What reviews reported about exchange and access

Menachemi and colleagues’ review of health-information exchange reported benefits in the studies with designs suitable for causal inference, including fewer duplicated procedures and lower costs. The authors also noted that much of the evidence came from the United States and was concentrated in particular exchanges. Dobrow and colleagues’ review of interoperable records and exchanges reported many positive measurement outcomes alongside negative or equivocal results. The authors did not systematically evaluate the quality of the primary studies, which limits the interpretation of those findings.

Li and colleagues examined record interoperability, patient safety and care quality in high-income settings. They reported positive findings in some categories but concluded that benefits remained unclear because interventions, designs, outcome measures and study quality varied. This qualification distinguishes reported findings from a general promise about interoperable software. The reviews examined particular implementations and settings, and their findings cannot be converted into a recommendation about an individual’s medical care.

Patient access is another software function. MedlinePlus describes a personal health record as information maintained by the individual; Wikipedia describes portals as online applications for interaction with providers. Wikipedia’s HIPAA article describes privacy and security rules and the right of access to personal health information. Ammenwerth and colleagues’ Cochrane review assessed adult access to electronic records. The authors found most effects uncertain, rated the evidence low or very low, and noted inconsistent terminology and difficulty distinguishing access alone from additional functions.

Prescribing and remote services as information functions

Wikipedia defines electronic prescribing as electronic preparation and transmission of prescription information. Its telehealth article describes telecommunications used for remote care, education, administration and public health, with telemedicine as a narrower part of that field. Bargeri and colleagues’ umbrella review examined telemedicine for musculoskeletal disorders. The authors reported beneficial or comparable patient-reported outcomes in much of the reviewed evidence, but rated most included reviews critically low quality and identified gaps in patient-experience, objective-outcome and cost evidence. Those are attributed research findings with stated limits, not instructions to use a service or a medical claim by this reference.

These subjects connect to interoperability and open standards, publicly funded software and its licenses, and United States software policy. The connections concern data structures, rights and public rules. The studies’ findings remain the findings of the authors and settings described, with their qualifications attached.