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NLM Health Data Standards Executive Summary for 2015

As the coordinating body for clinical terminology standards within HHS, the National Library of Medicine has a diverse and ever-growing portfolio of products and services that supports interoperability and the unambiguous exchange of health data. Below is a summary of the major activities and accomplishments in this domain in calendar year 2015.

AccessGUDID brought exchange of device information within reach of EHRs

In cooperation with the Food and Drug Administration, NLM launched AccessGUDID in early 2015. AccessGUDID allows search and retrieval of all of the over 200,000 records in the FDA Global Unique Device Identifier Database (GUDID). NLM also stood up a web service that allows machines to retrieve device information by UDI.

In 2016, Certfied EHR technology can use the AccessGUDID web service to retrieve implantable device information by UDI, which will provide information such as the device name, manufacturer, lot number, as well as the SNOMED CT identifier and name of the device that can be stored in a patient record. This will allow health care providers to know exactly what implantable device is in the patient, determine important safety factors such as MRI sensitivity of a device, and unambiguously exchange information about the device to other providers in the spectrum of care.


Value Set Authority Center (VSAC) Collaboration "un-siloed" the value set creation process

In December of 2015, the Value Set Authority Center (VSAC) launched VSAC Collaboration – a tool that provides communication, knowledge management and document management tools for value set authors and stewards with the goal of supporting the highest quality value sets for use in electronic health records. VSAC Collaboration provides tooling that can help 'un-silo' the value set authoring process, by allowing value set authors to get feedback on their content as it is development and draft stages, resulting in the publication of higher quality value sets.

In addition, VSAC continues to provide authoring and retrieval services for value sets that support Centers for Medicare & Medicaid Services (CMS) electronic Clinical Quality Measures (eCQMs). On May 1, 2015, CMS used VSAC to publish nearly 2,000 value sets for the 2016 eCQM Annual Update in support of Meaningful Use Stage 2.


NLM provided SNOMED CT maps that supported the transition to ICD-10-CM

SNOMED CT is one of a suite of designated standards for use in U.S. Federal Government systems for the electronic exchange of clinical health information. As the United States National Release Center for SNOMED CT, NLM makes the International Release of SNOMED CT and derivative releases available for U.S.-based SNOMED CT Affiliates. Additionally, NLM creates, maintains and releases the US Edition of SNOMED CT two times a year to provide access to U.S.-specific concepts needed in U.S. healthcare systems. Some of these concepts are later promoted to the International Release of SNOMED CT. NLM provides the SNOMED CT to ICD-10-CM map to facilitate the integration of clinical and administrative data. This year, the coverage of the map was expanded to 66,257 SNOMED CT concepts. With the transition to ICD-10-CM in October 2015, ICD-9-CM codes are no longer used but are still found in medical records. NLM updated and will continue to provide maps to enable the conversion of legacy ICD-9-CM diagnosis and procedure data to SNOMED CT.

NLM added 1,830 new concepts to the U.S. Edition of SNOMED CT in 2015. These new concepts come from user submissions via the U.S. SNOMED CT Content Request System (USCRS), which received just over 3,000 submitted requests last year. New content in 2015 centered around the addition of lateralized fractures that correspond to the inclusion of laterality categories in ICD-10-CM as well as a number of food items that could potentially be involved in adverse reactions and intolerances. Substantial US-specific content derived from multiple domains in the Kaiser Permanente Convergent Medical Terminology donated to NLM and IHTSDO was also added to the U.S. Edition.

In 2015, NLM also released a number of additional SNOMED CT-related resources including: 10 Convergent Medical Terminology (CMT) subsets, 7 specialized International SNOMED CT Release files from the IHTSDO – including the LOINC-SNOMED CT Cooperative Project Technology Preview, 4 Clinical Observations Recording and Encoding (CORE) Problem Subset updates, 2 Route of Administration subset updates, and a number of additional releases. NLM also worked with the IHTSDO on the timeline to sunset the SNOMED CT RF1 format as well as a number of legacy release files. A webinar and additional educational documents were provided to assist users on the retired formats and in the transition to SNOMED CT RF2.

In August, NLM released a new web page - Nursing Resources for Standards and Interoperability, a resource for nurses, students, informaticians, and anyone interested in nursing terminologies for systems development. The page describes the role of SNOMED CT and Laboratory Observation Identifiers Names and Codes (LOINC) in implementing Meaningful Use in the United States, specifically for the nursing and care domain.


NLM funded and expanded Logical Observation Identifiers

LOINC is a set of universal codes and names to identify laboratory and other clinical observations which facilitates the exchange and pooling of clinical results for clinical care, outcomes management, public health and research. The Regenstrief Institute, Inc., an internationally renowned healthcare and informatics research organization, maintains the LOINC database and supporting documentation, and the RELMA mapping program. In 2015, LOINC collaborated with agencies, industry, and professional societies to create terms that will work for both clinicians and researchers. Some of the noteworthy activities of resulted in:
  • The creation of hundreds of LOINC terms for reporting adult echocardiography, angiography, and cardiac procedures in collaboration with Digital Imaging and Communications in Medicine (DICOM) and echocardiographic industry, with input from the American Society of Echocardiography and the Japanese Circulation Society.
  • 200 new LOINC terms for the National Ophthalmic Disease Genotyping and Phenotyping Network (eyeGENE) designed for use in routine ophthalmology care as well as research, with input from the National Eye Institute (NEI).
  • Unification of RadLex and LOINC for computerized tomography (CT) scans. Developed a collaborative agreement with the National Institute of Biomedical Imaging and Bioengineering (NIBIB) and the Radiological Society of North America (RSNA), a large professional society, to unify the remaining radiology standards.
  • A map from LOINC to IEEE standard device codes and the signing of an MOU (Memorandum of Understanding) with the National Institute for Standards and Technology (NIST) and IEEE international standards organization.
  • Updated LOINC database to fully reflect expanded PROMIS content of functional status measures, which was funded by NIH.
  • Development of LOINC code content required to implement the IOM and CPIC guidelines regarding pharmacogenomics test results in collaboration with the HL7 Clinical Genomics Working Group and the Clinical Pharmacogenetics Implementation Consortium (CPIC).
  • Finalization of Physical Therapy Outcomes Registry for the American Physical Therapy Association (APTA), scheduled to go live in January 2016.
  • Updated 231 human leukocyte antigen (HLA) allele and antigen terms per current guidelines for the National Marrow Donor Program.

Additionally in 2015, LOINC added codes for many scopes including a large number of functional standards, including:
  • The addition of more than 3,000 total new observation or report terms to LOINC database.
  • The addition of terms for survey instruments that address a wide range of health issues including osteoarthritis, cognition, pain, and social, psychological and behavioral health. These include the Hip disability and Osteoarthritis Outcome Score (HOOS), Knee injury and Osteoarthritis Outcome Score (KOOS), Veterans’ RAND brief health surveys (VR-12 and VR-36), General Practitioner Assessment of Cognition (GPCOG), Boston University Activity Measure for Post-Acute Care (AM-PAC), Vanderbilt ADHD Diagnostic Rating Scale, 2015 Edition Health IT Certification Criteria set of terms related to observations, Healthcare Effectiveness Data and Information Set (HEDIS) 2016 Value sets, Nursing Management Minimum Data Set (NMMDS), ADVAULT (Advanced Medical Directives), American National Adult Reading Test (AMNART), Brief Pain Inventory (BPI), HARK (four questions to identify intimate partner violence, developed from the Abuse Assessment screen), Healthy Weight Survey (HWS), National Health Care Surveys (NHCS), National Health and Nutrition Examination Survey (NHANES), and Outpatient Physical Therapy Improvement in Movement Assessment log (OPTIMAL).

RxNorm enhanced Prescribable Names project

In 2015 the ongoing Prescribable Names project – creating e-prescribing display names for the current content in RxNorm – led to the identification and removal of obsolete injectable drug content. After months of discussion with interested parties from National Council for Prescription Drug Programs, (NCPDP), the Department of Veterans Affairs, the Food and Drug Administration, and commercial drug compendia, NLM decided to represent injectable single dose drugs based on the quantity available and not the concentration as administered to the patient or the first dilution. This led to five new dose forms: Auto-Injector, Cartridge, Pen Injector, Jet Injector, and Injection. These changes required the review of all drug labels. As part of the review the decision was made to remodel only those drugs that are currently on the market in the US and sold by non-compounding pharmacy. During this review many drugs that are not on the market in the US (yet were being represented as active by the compendia or SPL) were identified and removed. There has been a significant amount of feedback and interaction between the commercial compendia and RxNorm staff, and the compendia are all happy to update their files. In 2015 over 500 drugs were identified as inactive as part of this review.

NLM hosted another DailyMed Jamboree

On September 24, 2015, NLM hosted the 3rd Annual DailyMed Jamboree. Speakers from the Federal government (ONC, CMS, NLM), industry (First Data Bank), academia (University of New Mexico, University of Pittsburgh), pharmacy standards groups (American Society of Health Systems Pharmacists (ASHP), United States Pharmacopeia (USP), and others attended and gave presentations.

RxNav and Drug APIs queried more than 1 billion times

Users queried NLM Drug APIs over 1 billion times in 2015, which was an all-time high. The top query is for resolving NDCs into RxCUIs. Mapping drug names and identifiers accounts for 70% of all queries; the remaining 30% is for getting properties and relations of drug entities. MedlinePlusConnect was the single largest customer, accounting for 27% of traffic. Investigative reporters used RxMix to analyze prescription data to assess the use of psychiatric drugs in juvenile correctional facilities in Pennsylvania; NLM OCPL published a piece to highlight the NLM contribution to this investigation.


The Common Data Element Repository provided a platform for NINDS data element pilot project

The NLM Common Data Element repository (CDE) hosts data elements from a wide range of content providers. There are NIH-funded data elements from NIDA, NINDS, and NCI, as well as cutting-edge initiatives such as PhenX and PROMIS. Data elements from ARHQ are also in the repository. The CDE repository provides tooling (search, browse, compare) that can be used in the harmonization and de-duplication of data elements. For example, while NINDS has been creating common data elements in the areas of neurological disorders and stroke since 2005, leadership at NINDS is interested in how the NLM CDE Repository could expedite development of CDE collections for new disease areas and offer new opportunity for collaboration and harmonization. Three NINDS communities have already begun to meet, were introduced to the tool, and/or are working through initial workflow/administrative rules for their projects in the context of the Repository: Chiari & Syringomyelia, Subarachnoid Hemorrhage, and Cerebral Palsy. While the NINDS CDE Steering Committee will ultimately vet the resulting CDEs to assure consistency/harmonization with existing NINDS CDEs, NINDS is not otherwise directing or providing resources to support the work of the disease specific committees.

The Cerebral Palsy Working Group is beginning the process of CDE selection and asked NLM for training on using the Repository. A demonstration of the Repository was presented to a group of about 30 Cerebral Palsy healthcare professionals and/or researchers in mid-May 2015. They have divided into smaller subgroups to identify CDEs based on domain and will include draft recommendations in the repository to present at a national conference in the future. NLM staff demonstrated the Repository to a group of about 16 healthcare professionals and/or researchers of subarachnoid hemorrhage (SAH) in 3 separate sessions over several weeks in July and August 2015. The SAH group also divided into smaller working groups, but has elected a "power user" to learn the Repository and curate CDEs on behalf of their respective smaller groups. They will present their draft recommendations in a national conference in Spring 2016.


Expanded UMLS coverage and services

In 2015, the Human Phenotype Ontology (HPO) was added to the UMLS Metathesaurus. HPO strives to provide a standardized vocabulary of phenotypic abnormalities associated with human disease. Under development with input from OMIM, Orphanet, and medical literature, HPO provides a controlled vocabulary with an ontological, multitier structure with each term in the HPO representing a specific phenotypic abnormality. HPO currently contains approximately 11,000 terms and over 115,000 annotations to hereditary diseases, and provides a large set of HPO annotations to approximately 4,000 common diseases. HPO is useful for clinical diagnostics in human genetics, bioinformatics research on the relationships between human phenotypic abnormalities and cellular and biochemical networks, for mapping between human and model organism phenotypes, and for providing a standardized vocabulary for clinical databases, among many other things. Inclusion of HPO in the Metathesaurus has developed into an international collaboration with the HPO team, led by Dr. Peter Robinson at the Charité, Berlin, Germany, and HPO staff in Germany and Oregon. NLM Terminology Editors extensively reviewed the HPO insertion in the Metathesaurus, and established an ongoing dialogue with the HPO team that has been instrumental in ensuring accurate representation in the Metathesaurus. Detailed information on how HPO data is represented in the Metathesaurus is documented on our UMLS vocabulary representation pages.

On the technical side, UMLS now as a REST-ful API available to implementers as of November 5th, 2015. For those using the UMLS SOAP API, an additional installation option using Maven is now supported. See the UMLS API technical documentation for additional details.

Provided new codes and health IT technical assistance for nationwide newborn screening public health efforts

The Newborn Screening Coding project created and mapped codes for Newborn screening conditions (Mucopolysaccharidosis type I (MPS I) and X-linked adrenoleukodystrophy (X-ALD)) and the analytes used to screen for them. These codes were then added to the Recommended Uniform Screening Panel or state public health screening protocols. Also, based on requests and input from 8 state newborn screening programs* that are mapping to NLM-supported standard codes including LOINC and SNOMED, the Association for Public Health Laboratories and the Newborn Screening Technical assistance and Evaluation Program Health IT Workgroup added/revised codes related to newborn screening interpretations, feeding types, and infant NICU factors that affect newborn screening interpretation.
*Delaware, Michigan, Minnesota, Nebraska, Ohio, Pennsylvania, Washington, Wisconsin