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HealthcareTerminologies andClassifications:

An Action Agenda for the United States

American Medical Informatics Association and American Health Information Management Association

Terminology and Classification Policy Task Force

AHIMA and AMIA Terminology andClassification Policy Task Force Members

Keith E. Campbell, MD, PhD Chair, AHIMA and AMIA Terminologies and Classifications Policy Task ForceChief Technology Officer, Informatics, Inc., and Assistant Clinical Professor;Department of Medical Informatics and Clinical Epidemiology, Oregon Health andScience University

Suzanne Bakken, RN, DNSc, FAAN Alumni Professor of Nursing and Professor of Biomedical Informatics School ofNursing and Department of Medical Informatics, Columbia University

Sue Bowman, RHIA, CCS Director of Coding Policy and Compliance, American Health InformationManagement Association

Christopher Chute, MD, PhD Professor and Chair of Biomedical Informatics, Mayo Foundation

Don Detmer, MD, MA President and Chief Executive Officer, American Medical Informatics Association

Jennifer Hornung Garvin, PhD, RHIA, CPHQ, CCS, CTR, FAHIMA Medical Informatics Postdoctoral Fellow Center for Health Equity Research andPromotion, Philadelphia Veterans Administration Medical Center

Kathy Giannangelo, MA, RHIA, CCS, CPHIMS Director, Practice Leadership, AHIMA

Gail Graham, RHIA Director, Health Data and Informatics Department of Veterans Affairs

Stanley M. Huff, MD Professor of Medical Informatics, University of Utah Senior Medical Informaticist,Intermountain Healthcare

Linda Kloss, MA, RHIA, FAHIMA Chief Executive Officer, AHIMA

Margaret Skurka, MS, RHIA, CCS Professor and Director of Health Information Programs, Indiana University Northwest

Mary Stanfill, RHIA, CCS, CCS-P Vice President, Practice Resources, AHIMA

Valerie Watzlaf, PhD, RHIA, FAHIMAAssociate Professor, Department of Health Information Management, School ofHealth and Rehabilitation Sciences, University of Pittsburgh

The American HealthInformation ManagementAssociation (AHIMA) is the premier association of healthinformation management(HIM) professionals. AHIMA’s51,000 members are dedicated tothe effective management ofpersonal health informationneeded to deliver qualityhealthcare to the public.Founded in 1928 to improve thequality of medical records,AHIMA is committed toadvancing the HIM profession inan increasingly electronic andglobal environment throughleadership in advocacy,education, certification, andlifelong learning. To learn more,go to www.ahima.org.

The American MedicalInformatics Association (AMIA)is the premier organization inthe United States dedicated tothe development and applicationof medical informatics in thesupport of patient care, teaching,research, and healthcareadministration. AMIA linksdevelopers and users of healthinformation technology, creatingan environment which fostersadvances that revolutionizehealthcare. To learn more, go towww.amia.org.

Acknowledgements

Table of Contents

Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .4

Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5

Magnitude of the Problem . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7

The Vision and Goals for the US . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .9

What to Do Next . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .15

Role of AHIMA and AMIA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .18

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .19

Table 1: Governance of Various Terminology Systems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .20

Table 2: Development and Maintenance of Various Terminology Systems . . . . . . . . . . . . . . . . .23

Appendix A: Australia, the United Kingdom, and Canada . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .27

Appendix B: Terminology Services and Tools . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .29

Table 3: Terminology Services and Tools in Four Organizations . . . . . . . . . . . . . . . . . . . . . . . . .30

Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .32

This white paper is a revised version of a paper originally released by AHIMA and AMIA in 2006.

©2007

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Healthcare Terminologies and Classifications: An Action Agenda for the United States

Executive Summary

Terminologies and classifications form thefoundations of information content in theelectronic health record (EHR) and are thebasis for research, public health reporting, andhealthcare payment.1 They are integral tointeroperability and, thus, a successful nationalhealth information system that promisesincreased patient safety and reduced costs.

Although there has been significant progress inthe United States to better understand the roleterminologies play in our health informationsystems, and to make terminologies morebroadly available in machinable forms, moremust be done to ensure that this progressserves as a robust foundation for theinformation content of the EHR.

The healthcare industry–including thegovernment, professional organizations, publicand private institutions, and health informaticsand information management professionals–must address the issues before the UShealthcare system is marginalized. To not do sowould mean continued reliance on poor-quality data for decision making and thespending of dollars to retrofit a system that isobviously broken.

This report describes challenges that requireaction. It proposes the formation of acentralized terminology authority, and othersteps, to address these challenges.

Task Force Vision andRecommendations

The American Medical Informatics Association(AMIA) and the American Health InformationManagement Association (AHIMA) are pleasedwith the progress made thus far and are

committed to the development of the emergingnational health information system. But bothorganizations recognize that additionalresources and appropriate funding are neededto build on initial work for healthcareterminologies and classifications strategy,governance, and development andmaintenance processes.

To address these issues, AHIMA and AMIAconvened a Terminology and ClassificationPolicy Task Force composed of experts inmedical and nursing informatics (a field thatstudies the support of medicine by informationsystems), health information managementprofessionals, experts in nosology (the branchof medicine that deals with the classification ofdiseases), and educators. The group’s goal wasto develop recommendations for the majorchallenges that would help establish a processthat results in interoperability. The Task Forcehas formulated a vision and associated goalsand recommendations that it hopes will beused to frame a public-private dialogue abouthow to redesign the US approach to healthcareterminologies and classifications against abackdrop of international approaches andachievements.

The vision consists of the following:

• US governance occurs from a nationalperspective against a backdrop ofinternational agendas.

• US policy coordinates with othercountries, and the US actively collaboratesand shares costs.

• Coordination and collaboration occurswith international terminology andclassification development andmaintenance initiatives.

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1. For purposes of this report, an EHR is defined as an information system designed to provide access to complete andaccurate clinical data, practitioner alerts and reminders, clinical decision support systems, and links to medical knowledge.Giannangelo, K. (Ed). Healthcare Code Sets, Clinical Terminologies, and Classification Systems. AHIMA. [Note: Within thisdefinition, a personal health record (PHR) only qualifies as an EHR if it is part of an EHR having the identified capabilities.]

• Terminologies, classifications, and mapsform a coherent set of policies andprocedures for openness and ensuredperformance.

• Transparency of process exists even whenthe development organization maintainsthe system within its own organization.

• Infrastructure for development andmaintenance of the terminology is subjectto an open process.

• Business process automation isimplemented, allowing organizations toparticipate and track the terminology andclassification development processes,reducing cost, and automating manyaspects of the system release cycles.

To implement this vision, the Task Forcerecommends that the healthcare industry—government, public and private institutions,and professional organizations—collaboratively undertake the following tasks:

• Create a publicly funded research anddevelopment project to preparespecifications for coordinated solutionsand where possible, consolidateterminology.

• Secure funding for the planning anddevelopment of a centralized authority,representing both public and privatestakeholders, to manage the funding andbe responsible for overseeing US

terminology and classificationdevelopment and maintenance, includingthe supporting systems.

• Develop a governance model for thecentral authority that is accountable to theneeds of the end users and implementers,and also has accountability for the fundingof the central authority.

• Commit to the adoption of soundprinciples for operation of a terminologyand classification standards developmentorganization.

The Task Force believes that the items on thisagenda must be accomplished. To this end,AHIMA and AMIA are ready to lead, inconcert with the appropriate governmentagencies, the US effort for terminologies andclassification reform. They recognize the USagenda for health information reform willrequire strong public and private collaboration.In the months to come, AHIMA and AMIAwill convene stakeholders to build a broaderunderstanding of the current problems,generate wide support for, and begin toconstruct a road map for change.

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Background

Healthcare classifications (systems that arrangetogether similar diseases and procedures andorganizes related entities for easy retrieval) andclinical terminologies (standardized terms andtheir synonyms that record patient findings,circumstances, events, and interventions) arethe systems that describe, organize, andstandardize the rapidly evolving language ofmedicine. In addition, terminologies andclassifications form the information content inthe electronic health record (EHR) and thepersonal health record. They are the basis forpublic health reporting, performancemeasurement and quality reporting, research,and billing and payment for healthcareservices. They are integral to interoperability,and thus, to deployment of a nationwide healthinformation network (NHIN) capable ofdelivering on the promise of safer and morecost-effective results.

An NHIN and the interoperable exchange ofhealth information between standard EHRs ofhealthcare data depend on:

• Clinical content identified with clinicalterminologies, which maintain highlyspecific and descriptive patient care dataand classifications for aggregate reportingthat can be reliably captured, encoded,exchanged, and interpreted

• Common information models

• Management and coordination of thevarious terminology and classificationsystems in a synchronized fashion for astreamlined life cycle

How Terminologies and ClassificationSystems Are Used

Clinical terminologies and classificationsystems have been in use for many years—forexample, the International Classification ofDisease (ICD) was created in the 19th centuryas a way to identify the causes of death. TheSystematized Nomenclature of Medicine(SNOMED) began as an enhancement to theStandard Nomenclature of Diseases andOperations, first published in 1965 and usedto organize information from surgicalpathology reports.

In ad d i ti on to their len g t hy history, term i n o l ogi e sand cl a s s i f i c a ti ons can be used in different ways .For ex a m p l e , term i n o l ogies are used pri m a ri ly toc a ptu re clinical inform a ti on . As su ch , t h ey areh i gh ly det a i l ed and have su b s t a n tial gra nu l a ri ty,but at the same time they lack reporting ru l e sand guidel i n e s .

Classification systems are intended forsecondary data use, including quality of caremeasurement, reimbursement, statistical andpublic health reporting, operational andstrategic planning, and other administrativefunctions. While reporting rules and guidelinesfor administrative code sets exist, not everyoneis following them.

In the United States, the most commonly usedsystems are the International Classification ofDiseases, Ninth Revision, Clinical Modification(ICD-9-CM) and the Current ProceduralTerminology (CPT®). These systems are usedto organize specific diseases and procedures ina general classification schema. This allows thespecific diseases and procedures to be groupedinto more broad-based categories and thenused for reimbursement (ICD-9-CM codes to

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Diagnosis-Related Groups), quality of caremeasures (ICD-9-CM codes to patientsatisfaction rankings), or resource utilizationmeasures (CPT codes to cost of care). Becauseclassification systems are considered broaderways to classify specific diseases andprocedures, they are not the most appropriatesystem to use to identify and capture theclinical aspects of an episode of care.

For example, in ICD-9-CM and its 10threvision, ICD-10-CM, a hospital stay for anewborn is represented by codes identifyingthe type of birth (that is, live-born infant,single or multiple births, born in hospital oroutside of hospital, and vaginal versus cesareandelivery) and medical conditions or risk factorsthe infant may have. In contrast, SNOMEDCT® codes provide the complete clinical detailfor a healthcare encounter. The Apgar score(an assessment of the physical condition of anewborn infant), for example, would berepresented by separate SNOMED CT® codesfor the cardiac score, respiratory score, muscletone, reflex response, and color.2

Together, terminologies, such as SNOMEDCT®, and classification systems, such as ICD-9-CM, ICD-10-CM, and ICD-10-PCS, providethe common medical language necessary forthe EHR and for population health reporting,quality reporting, personal health records,safety, clinical trials, biosurveillance, andreimbursement.

Terminologies, Classifications, andInformation Models

But simply having a list of relevant words isnot the same as representing all the relevantdata in a computable form. The process of dataor information representation begins withinformation models, not just the terms and

codes alone. For clinical data representation, alibrary of shared models linked to value setsdrawn from standard coded terminologies andclassifications is needed. This means resolvingissues related to the interface betweeninformation models.

Both the National Committee on Vital andHealth Statistics (NCVHS) and the Institute ofMedicine have noted that standardrepresentation of the full meaning of patientmedical data requires integrating terminologymodels with models of context and otherstructural relationships.3, 4 The NCVHS has alsoconcluded when patient medical recordinformation standards do not include acomprehensive information model andterminology model, mapping is made moredifficult.

Terminologies, Classifications, andMapping

Mapping is a process that links the contentfrom one terminology or classification schemeto another.5

Many factors within the healthcare industry aredriving mapping technology, including themovement to adopt EHRs and create a NHIN.6

Efforts to control increased administrativecosts within healthcare are also a factor. Theshortage of qualified coders increases costs andinefficiencies. These issues exacerbate the needfor computer-assisted coding (the automaticgeneration of codes based on clinicaldocumentation) and the use of mappingtechnologies to increase productivity andcoding consistency. Today, computer-assistedcoding and mapping systems are an achievablevision for the future, but there is still some wayto go.

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2. Dougherty, M. “Standard Terminology Helps Advance EHR.” Journal of AHIMA 74, no. 10 (2003): 59-60.3. National Committee on Vital and Health Statistics. Patient medical record information terminology analysis reports. 2002.4. Institute of Medicine. “Key Capabilities of an Electronic Health Record System.” Letter Report of the

Committee on Data Standards for Patient Safety, Board on Health Care Services, Institute of Medicine, 2003.5. Available at www.nlm.nih.gov/healthit.html.6. Available at www.nlm.nih.gov/healthit.html.

An EHR that can map from a referenceterminology to a classification system is rare.There are currently no nationally orinternationally recognized standards for mapdevelopment and validation. In addition, thereis a lack of coordination among terminologyand classification development organizations,which inhibits the development of maps. Thereis also no standard definition of a “valid” map.Iterative research and development is needed,along with testing in real environments, toachieve a usable map.

The NLM has taken a lead in this importantarea and has made maps from SNOMED CT®to ICD-9-CM, SNOMED CT® to CPT, and aLOINC to CPT preliminary draft available.These maps can serve as a starting point for thedevelopment of standards and for testing theutility of different mapping approaches.

Magnitude of the Problem

The terminologies and classifications lifecycle—in particular, development, distribution,and maintenance—is complex. Thiscomplexity causes problems for all who deal insome form or another with them. There are arelatively small number of vendors, andexisting systems are not able to seamlesslyexchange information with other systems. Thismakes commercial offerings challenging andcreates a high risk of vendor lock in7 andsignificant susceptibility to vendor failure. Inaddition, no comprehensive open sourcedevelopment environment exists, resulting in

authoring environments that are notsufficiently responsive to improve the creationand revision of terminologies. The outcome isthe creation of content in the system based ona defined need rather than desirablecharacteristics of a controlled clinicalterminology.8 Current terminology effortstypically do not meet rudimentarydevelopment practices considered routine forsoftware development in other industries orsubject domains. Terminology systems alsoprobably do not meet Food and DrugAdministration standards9 for embeddedsoftware—yet many should.

The situation is complicated by the lack ofbusiness process automation10 acrossorganizations or departments for updating ormaintaining the terminology. Even a singleorganization is required to use multiple tools ifit is to function today. Appendix A illustratesthis complexity for four healthcareorganizations.

Adoption and implementation are inthemselves complicated issues, with manygoverning bodies determining what systemshould be adopted and implemented. Inaddition, while there have been discussionsabout the basic principles for maintenance andwhat the ideal process should look like,attributes and standards for terminologydevelopment and maintenance processes havenot been brought forth, discussed, or agreed toby the principal stakeholders—that is, theowners of the terminologies and classificationsand the users of the systems. Simply findingout what systems already exist, what they are

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7. Wikipedia states vendor lock-in is a situation in which a customer is so dependent on a vendor for products and servicesthat he or she cannot move to another vendor without substantial switching costs, real and/or perceived.

8. Cimino, J. “Desiderata for Controlled Medical Vocabularies in the Twenty-First Century.” Methods of Information inMedicine 37 (1998): 394-403.

9. Many of the regulations enforced by the Food and Drug Administration (FDA) with regard to medical devices can befound in Title 21 Code of Federal Regulations (CFR) Part 800 to Part 1299. The information required in a 510(k)submission is defined 21 CFR 807.92. Among the list of 510(k) submission requirements is software development,verification and validation information.

10. Wikipedia states business process automation is the process of integrating enterprise applications, reducing humanintervention wherever possible, and assembling software services into end-to-end process flows.

used for, when they were adopted andimplemented, who maintains them, and whatthe release cycles are can be an onerous task.

Today’s proprietary standard developmentmodels hamper development and maintenanceof terminology standards by prohibiting openpublication of content. Terminology systemsare significantly lacking in any principledapproach to validation and quality assurance.

Despite its essential need, insufficient fundinghas also plagued the development andmaintenance of clinical terminologies andclassifications for years. The bulk of the work isdone by volunteers—experts in medical andhealth informatics, health informationmanagers, and experts in nosology (the branchof medicine that deals with the classification ofdiseases).

Other widely acknowledged problems include:

• The lack of sufficient incentives tocooperate

• Systems are seen as independent when theyare highly interdependent

• A general lack of understanding of howencoded data can support initiatives suchas quality or patient safety in thehealthcare environment

The Vision and Goals for the US

The American Medical Informatics Association(AMIA) and the American Health InformationManagement Association (AHIMA) are pleasedwith the progress made thus far and arecommitted to the development of the emergingnational health information system. But bothorganizations recognize that additionalresources and appropriate funding are neededto build on initial work for healthcareterminologies and classifications strategy,governance, and development andmaintenance processes.

To address these issues, AHIMA and AMIAconvened a Terminology and ClassificationPolicy Task Force composed of experts inmedical and nursing informatics (a field thatstudies the support of medicine by informationsystems), health information managementprofessionals, experts in nosology, andeducators. The group’s goal was to developrecommendations for the major challenges thatwould help establish a process that results ininteroperability. The Task Force has formulateda vision and associated goals andrecommendations that it hopes will be used toframe a public-private dialogue about how toredesign the US approach to healthcareterminologies and classifications against abackdrop of international approaches andachievements.

The Vision: The Task Force’s vision of theideal state for terminologies and classificationstakes into account key issues includinggovernance, licensing, and the methods used inthe terminologies and classifications lifecycle—specifically, development, distribution,and maintenance. It consists of the following:

• US governance occurs from a nationalperspective against a backdrop ofinternational agendas.

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• US policy coordinates with othercountries, and the US should activelycollaborate and share costs.

• Coordination and collaboration occurswith international terminology andclassification development andmaintenance initiatives.

• Terminologies, classifications, and mapsform a coherent set of policies andprocedures for openness and assuredperformance.

• There is transparency of process even if thedevelopment organization maintains thesystem within its own organization.

• The infrastructure for development andmaintenance of the terminology is subjectto an open process. The characteristics ofthis process include:

- Any classification algorithms requiredto transform terminology stated formsinto inferred forms are publiclydescribed and free of patent royaltiesso that any party may implement aterminology-capable classifierunencumbered.

- Interfaces to the terminologydevelopment infrastructure(automated term submission process,automated update services,terminology configurationmanagement services, andterminology authoring services) arepublicly described and licensed underan open source agreement such as theApache 2 license.11 An open sourcelicense is meant to ensure that anyparty can freely develop software thatcan interact with or replacecomponents of the terminologydevelopment infrastructureunencumbered by licensure fees,patent royalties, or from other

licensing restrictions that may requirecommercial organizations to disclosetheir proprietary source code. Alicense that requires a vendor to opentheir source code, such as the GNU(free software) style licenses, isinappropriate.

- Any fees associated with mandatedinfrastructure necessary to implementthe standard are under regulatorycontrol to assure that fees to supportthe infrastructure are not diverted.

• Business process automation that allowsorganizations to participate and track theterminology development process,reducing cost and automating manyaspects of the terminology release cycle isput in place.

The Goals: The goals of a coordinated policyfor the US that enables the Task Force vision builds upon lessons fromnational and international efforts in threeareas: (1) governance, (2) development and maintenance, and (3) acquisition, licensing,and implementation issues.

Governance

The Task Force recommended theestablishment of a centralized oversightauthority to accomplish these governancegoals:

• Ensure consistency in processes, systemcoordination, responsiveness to end users(vendors and those who use their systems),and the availability of robust, valid maps.

• Adopti on of u n i form ru l e s , reg u l a ti on s , a n dg u i delines for standard i zed term i n o l ogyand up-to - d a te cl a s s i f i c a ti on sys tems ac ro s sthe co u n try.

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11. Available at http://www.apache.org/licenses/LICENSE-2.0.html.

• Ensure that the organizations authorized todevelop, deploy, and maintain suchstandards and guidelines assume ongoingresponsibility to provide clarity with aspecific standard or guideline as required,publish and disseminate the standards orguidelines in a manner that is generallyunderstood, and respond in a timelymanner to all requests for clarification ofstandards or guidelines.

Simplifying GovernanceMeeting this goal will require changes in theway in which the US governs terminologiesand classifications. In the US, there is nocentralized oversight of terminologies andclassifications. Terminologies andclassifications have their own governanceprocess dictated by the organization who“owns” the system. Table 1 provides a summaryof the owners and governance processes forvarious terminology systems currently used inthe US. In many cases, the governance processis strictly an internal function of theterminology development organization withlittle detail available publicly. In a few cases, thegovernance process includes oversight by acommittee composed of users and otherstakeholders. The fragmentation illustrated inTable 1 prohibits interoperability. The numberof systems in existence and the resultingacronym alphabet soup make apparent theexisting complexity of governance.

An important consideration when choosing tointegrate a component such as a terminology isto understand the governance model of theorganization providing the component, eithervia license or through contribution to thepublic domain. For example, the problem withthird-party control is particularly challengingfor SNOMED CT® because the governance ofSNOMED CT® development and licensingpolicies has been subject to approval by theCAP board of governors, not by the end usersor licensees of the SNOMED CT® terminologystandard. In contrast, HL7’s board of directorsis elected by the HL7 members and is fiduciallybound to serve their interests. The proposed

formation of a new SNOMED SDO outside ofCAP most likely will resolve this importantgovernance issue.

Fragmentation of the governance process isalso illustrated by the current situation withthe ICD. While the National Center for HealthStatistics (NCHS) maintains the US clinicalmodification if ICD-9-CM and ICD-10-CMfor diagnosis coding, the Centers for Medicareand Medicaid Services (CMS) are responsiblefor development and maintenance of theprocedure coding systems. While subject to asingle coordination and maintenancecommittee, coordination of these two essentialdimensions could and should be strengthened.

Recognizing that the US could learn mu ch fromo t h er co u n tries that have alre ady rede s i gn edt h eir govern a n ce and su pport processes forterm i n o l ogies and cl a s s i f i c a ti on s , the Task Forces tu d i ed the approaches taken by Ca n ad a ,Au s tra l i a , and the Un i ted Ki n gdom . Details fore ach co u n try are found in Appendix B.

Development and MaintenanceThe Task Force identified the following goalsfor terminologies and classificationsdevelopment and maintenance:

• The infrastructure for development andmaintenance of the terminology is subjectto an open process. The characteristics ofthis process include:

- Any classification algorithms requiredto transform terminology stated formsinto inferred forms are publiclydescribed and free of patent royaltiesso that any party may implement aterminology-capable classifierunencumbered.

- Interfaces to the terminologydevelopment infrastructure(automated term submission process,automated update services,terminology configurationmanagement services, andterminology authoring services) are

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publicly described and licensed underan agreement at least as open as theApache 2 license.

- Any fees associated with mandatedinfrastructure necessary to implementthe standard are under regulatorycontrol to assure that fees to supportthe infrastructure are not diverted.

• Robust methods for certifying terminologysystems for use in patient-care applicationsare developed. These robust methods arepatterned after those developed for othersoftware components, whose failure mayresult in loss of life, such as the DO-178B“Software Considerations in AirborneSystems and Equipment Certification.”Adapting that specification for terminologyrequires the terminology developmentorganization to provide at least thefollowing:

- Certification plan

- Development plan

- Verification plan

- Configuration management plan

- Requirements standards

- Design standards

- Verification cases and procedures

- Verification results

- Problem reports

- Configuration management records

- Quality assurance records

Need for a Standard ProcessIn com p a ri s on to the above goa l s , pre s en t ly theUS healthcare indu s try has no standard proce s sfor the devel opm ent of term i n o l ogies andcl a s s i f i c a ti on s . Typ i c a lly, the processes forterm i n o l ogy and cl a s s i f i c a ti on devel opm ent va ry, gen era lly depending on the size of t h edevel opm ent or ga n i z a ti on and the purpose ofthe standard . This va ri a bi l i ty is evi dent in Ta ble 2.

Many systems are developed by professionalassociations and academic institutions, whileothers are developed by government agencies.Some organizations follow relatively formalsets of processes for developing and refiningconcepts, such as reliance on an editorial boardfor approval, whereas other organizations’processes may be informal. In addition,developers may create new terms at willwithout a formal or open process with inputfrom the users of the system.

Each organization or developer determinestheir own maintenance process, and updateschedules vary considerably. The level ofresource commitment to ongoing systemmaintenance also varies, which in turninfluences the maintenance process and thefrequency of updates. In some cases,maintenance is handled entirely by the systemdeveloper, while in other cases, a committee ofindustry experts oversees the maintenanceprocess.

Meetings to address maintenance issues may beopen to the public or may be private. For thoseprocesses that include open meetings, finaldecisions regarding system modifications maybe made privately rather than during the openmeeting. Some processes allow submission ofrequests for modifications from any source,whereas others place restrictions on requesters.As shown by the variability in the level of detailoutlined in Table 2, terminologies even vary inthe level of transparency regarding theirmaintenance processes.

There is also considerable variability in thetiming of the release of terminology orclassification system modifications and theireffective dates. As Table 2 shows, someterminologies do not have an establishedupdate schedule. And variability in the methodof publicizing the modifications is an issue aswell. For example, some systems are updatedannually, others biannually, and still others areupdated quarterly or even more frequently.Even for those systems that are updatedannually or biannually, the effective dates still

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differ. The variability in maintenance schedulesis not purposeful or useful, as it increases thecost and complexity of using terminology andclassification systems and keeping them up-to-date.

In some cases, a change in the system updateschedule would require legislation. Forinstance, federal law mandates theimplementation of ICD-9-CM updates onOctober 1 and CPT updates on January 1 forthe use of these systems in the Medicareprogram. There is no central Web site foraccessing system updates or an established,standardized process for notifying thehealthcare industry of an update release.

The “official” source of clarification for using aparticular terminology or classification and theprocess for obtaining an “official” answer arenot always clear. The integrity of coded dataand the ability to turn it into functionalinformation require the use of uniformstandards, including consistent application ofstandard codes, code definitions, and reportingrequirements. In Table 2, the system developeris generally listed by default as the officialsource for clarification because there is noother identified source.

In many cases, there is no clearly definedprocess for obtaining clarification. As a result,obtaining guidance on the proper use of aterminology or classification is sometimesdifficult, time-consuming, and expensive. Toadd to the complexity, there may be more thanone official source for a system—for example,the American Medical Association isrecognized as the source for information onthe proper use of CPT codes for physicianproviders; however, the American HospitalAssociation is the official clearinghouse forhospital providers12

Acquisition, Licensing, andImplementation

The Task Force identified the following goalsfor terminologies and classificationsacquisition and implementation:

• A licensing model that embraces thefollowing:

- More inventiveness, not thepromulgation of monopolies (evennonprofit or regulatory ones) thatstifle innovation and hampercollaboration

- Open standards to overcome thechallenges and standards developmentorganizations that better serve thehealthcare community needs byproviding open standards

• Business process automation that allowsorganizations to participate and track theterminology development process,reducing cost, and automating manyaspects of the terminology release cycle isput in place.

• Establishment of funds for healthcarestandards in ways that do not rely onrevenue generated by selling the standardsthemselves.

Acquisition and LicensingThe way in which licensing is done today is afar cry from the goal. Similar to the systemsdiscussed in the previous section, healthcarestandards that structure terminologies andclassifications are developed by variousorganizations. These organizations are typicallynot for profit; however, the standards theyproduce are almost always released underproprietary licenses13 along with fees—eventhough the efforts to produce those standardsare often provided by resources external to thestandards organization itself.

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12. Available at www.ahacentraloffice.org/ahacentraloffice/html/coding_advice/hcpcs/index.html. 13. Wikipedia states that proprietary indicates that a party, or proprietor, exercises private ownership, control or use over an

item of property, usually to the exclusion of other parties.

Ta ke the case of s t a n d a rds devel opm en tor ga n i z a ti on Health Level Seven (HL7). It hasp l aced all intell ectual property of its standard si n to the public dom a i n ; h owever, it retains thecopyri ghts to publ i s h ed standards and sells thedoc u m ents as a revenu e - gen era ting mech a n i s mto help sustain the or ga n i z a ti on . The HL7l i cense requ i res that the spec i f i c a ti ondoc u m ents must ei t h er be purch a s ed or beava i l a ble on ly to mem bers who have limiteda bi l i ty to red i s tri bute them to their custom ers .This inabi l i ty to red i s tri bute spec i f i c a ti ons hash ad a direct influ en ce on the devel opm ent andd i s tri buti on of open source implem en t a ti ons ofHL7 spec i f i c a ti on s , s i n ce the spec i f i c a ti ons ofthose implem en t a ti ons cannot be distri buted toa group of po ten tial implem en ters who are notHL7 mem bers . Open po s ting of devel opm en tcon tent is thereby not all owed .

Even Logical Observation Identifiers, Names,and Codes (LOINC), a database protocolaimed at standardizing laboratory and clinicalcodes,14 charges no license fee for allowed usesbut has specific use restrictions. The LOINCCommittee has retained the copyright to itscontent so that it maintains editorial control ofthe content. It prohibits LOINC content to beused to make a competing coding system forobservations.15 These restrictions preventdevelopment or enhancement of otherproducts in ways that may promoteinteroperability because the other productsmay be regarded as “promulgating a differentstandard” and therefore is prohibited by theLOINC license. For example, it would be aviolation of the LOINC license to map LOINCinto an existing terminology by assigning anew identifier to the LOINC code and creatingthe appropriate linkages to the concepts in theexisting terminology. The inability to create

linkages in this way is a barrier to creating trueinteroperability between LOINC and otherimportant clinical terminologies.

The SNOMED CT® license is not standard i zed ,and different or ga n i z a ti ons have different ri gh t sand re s pon s i bi l i ties depending upon thei rp a rticular licen s e . The NLM vers i on of t h eSNOMED license pro h i bits distri buti on ofSNOMED con tent out s i de the US, and it alsopro h i bits mod i f i c a ti on of SNOMED “corecon ten t .” These re s tri cti ons make openco ll a bora ti on around SNOMED-based con ten tch a ll en ging for some and unten a ble for others .Ma ny or ga n i z a ti ons are relu ctant to en ga ge insu ch co ll a bora ti on wh en a third party is able toexercise unilateral con trol over con tent they maydevel op a depen dency upon —even wh en thatco n tent is ba sed upon their own wo rk. The newS DO may rem ove some of the barri ers tobroader com mu n i ty parti c i p a ti on in theen h a n cem ent and ex p a n s i on of SNOMED CT®.

There are two types of CPT licenses, dependingupon whether CPT codes will be used in aproduct that will be sold or distributed toothers or whether CPT will only be usedwithin a company and will not beredistributed. In both types, the license feestructure is per user. A user is defined as anindividual who directly accesses CPT data in aproduct or, in the case where CPT is embeddedin a product and not directly accessible, relieson embedded CPT data to perform his or herintended function with the product or itsoutput. These license requirements increase thecost of products containing CPT content andinhibit widespread use of CPT. Also,determining the number of CPT users for thepurposes of license fee calculation can bedifficult.

14


14. See www.regenstrief.org/medinformatics/loinc/.15. Available at www.regenstrief.org/loinc/license/. To prevent the dilution of the purpose of the LOINC codes and LOINC

table of providing a definitive standard for identifying clinical information in electronic reports, users shall not use theRELMA program, RELMA Users' Manual, RELMA database, LOINC Users’ Guide, LOINC database, LOINC table or relatedfiles, or the LOINC codes for the purpose of developing or promulgating a different standard for identifying laboratorytest results, diagnostic study reports, clinical measurements and observations or orders for these entities in electronicreports and messages.

Even the NLM’s Unified Medical LanguageSystem (UMLS) Metathesaurus, which servesas an official distribution vehicle for HIPAAstandard code sets and US government targetclinical vocabulary standards, requires alicense. While content may be used with fewrestrictions, some vocabularies require separateagreements, which may involve fees, with theindividual vocabulary producers.16

There are various justifications for resorting toproprietary licenses. These justifications rangefrom “we must get revenue to supportdevelopment of the standard” to “we mustprevent fragmentation of the standard.”Unfortunately, consequences of relying onproprietary licenses include deliberate orinadvertent creation of monopoly positions bystandards development organizations andlicenses that stifle opportunities for innovation.

Experience with open source software and theWorld Wide Web development have shownthat licensing restrictions are not helpful—andare also not necessary to prevent fragmentationof the standard. The HTTP protocol and thesuccess of the World Wide Web consortium(W3C) are successful and compellingdemonstrations of the potential of alternativeapproaches. All W3C documents are under anopen license that provides permission to copyor distribute, in any medium, for any purpose,without fee or royalty.17 W3C operations aresupported by a combination of member dues,research grants, and other sources of publicand private funding. W3C operations do notrely on revenue from the specifications of thestandard itself.

Eben Moglen, professor of law at ColumbiaLaw School, states that open source softwareprovides a “freedom to invent, not reinvent—not invent over again something someone else

had invented and locked up, but invent in theway that inventing was done in the great spurtof 19th-century inventiveness.”18

The recent dispute between two SDOs, HL7and ASTM International, over ownership ofideas contained within the ASTM Continuityof Care Record (CCR) and the HL7 ClinicalDocument Architecture (CDA) is an exampleof challenges that are created when standardsorganizations do not publish their works underopen licenses. Organizations should focus oninnovation and building on the foundationsprovided by others. They should not bepermitted to compete with each other forproprietary advantage.19

ImplementationImplementing terminologies and classificationsis not an easy task. Distribution is part of whatmakes it difficult. Terminologies are usuallydistributed through the developer or a middle-ware software or system application vendor.With more than 100 terminology andclassification systems, the communication ofreleases and updates affects the ease with whichvendors can incorporate them into productsfor distribution.

For example, the NLM’s UMLS has beendesignated as the central coordinating bodywithin the US Department of Health andHuman Services for patient medical recordterminologies.20 Coordination means thefollowing:

• Uniform distribution of designatedstandard vocabularies through the UMLSMetathesaurus

• Reducing peripheral overlap andestablishing explicit relationships betweenstandard clinical vocabularies (for example,SNOMED, LOINC, RxNorm)

15


16. Available at www.nlm.nih.gov/pubs/factsheets/umlsmeta.html.17. Available at www.w3.org/Consortium/Legal/2002/copyright-documents-20021231.18. Available at http://news.com.com/Open-source+politics+are+American+as+apple+pie/2100-7344_3-6079401.html.19. Available at www.healthcareitnews.com/story.cms?id=1292 and http://www.healthcareitnews.com/story.cms?id=3076.20. Available at www.ncvhs.hhs.gov/040922lt.pdf.

• Aligning standard clinical vocabularieswith standard record and message formats

• Mapping between standard clinicalvocabularies and administrative code setsand/or other important vocabularies21

While the UMLS was envisioned as adistribution mechanism for clinicalterminologies and classifications, it is not amajor distributor because of publication delayand difficulty in extracting data formats. Inaddition, the UMLS is not governed by amechanism that is directly accountable toimplementers and EHR developers, which mayhelp explain why they are going elsewhere forterminology content. Implementation thereforeis made complicated as most vendors go to thesource, or owner of the system, because ofdelay and complexity of user formats.

What to Do Next

The Task Force’s recommendations call forfunding to support the planning anddevelopment of an entity that would serve thepublic interest. This centralized authority,representing both public and privatestakeholders, is expected to manage fundingand be responsible for overseeing USterminology and classification developmentand maintenance policies.

There are many challenges for the healthcareindustry—government, public and privateinstitutions, and professional organizations—with regard to moving forward. A collaborativeundertaking will be the key to success with thefollowing:

1. Create a publicly funded research anddevelopment project to prepare specificationsfor coordinated solutions and where possible,consolidate terminology. The critical elementsfor the plan include policy, governance,

standards adoption, legal issues includinglicensing, technology, data integrityrequirements, maintenance, education andconformance testing, and a road map forchange so public and private industry sectorsunderstand the goals, target, and the requiredactions.

The main objectives of this work would be tocontinue the work of the Task Force inpartnership with the Office of the NationalCoordinator for Health InformationTechnology (ONC). AHIMA and AMIA willalso coordinate with Healthcare InformationTechnology Standards Panel (HITSP) toharmonize work. The work will initially focuson research to identify a governance model andfunding sources for the central authority. Thus,a significant part of the plan would be thedevelopment of a governance model for thecentral authority that is accountable to theneeds of the end users and implementers, andalso has accountability for the funding of thecentral authority. It will pursuerecommendations that emerge from theresearch and development project outlinedabove. Australia’s model has a number ofdesirable features. However, governance mustalso formally include care providers and otherend users. It need not be a governmentresponsibility—a quasi-governmental entitymight meet this need quite adequately ifpermanence of the structure can be ensured.

In addition, moving from the currentineffective and fragmented strategy foradoption and maintenance of terminologiesand classifications to a more efficient systemwill require a series of actions and long-rangechange strategies. Therefore, an additionaloutcome will be a road map for change sopublic and private industry sectors understandthe goals, target, and required actions.

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21. Available at www.nlm.nih.gov/nichsr/2005_NCVHS_July.ppt.

2. Secure funding for the planning anddevelopment of an entity that would serve thepublic interest.22 A centralized authorityresponsible for overseeing US terminology andclassification development and maintenance,including the supporting systems, is critical.Such an entity would represent both publicand private stakeholders, manage funding, andbe responsible for overseeing US terminologyand classification development andmaintenance policies.

Funding Structuring a public-private effort toadjudicate and set policy for variousstakeholders will require financial support(estimated to be between $5 and $50 million).These funds should be placed in one locationto do ongoing monitoring, research, andevaluation results to address:

• Quality of encoded data

• Quality of encoding systems

• Value of encoding data

• Patient safety issues pertaining to encodeddata

• Reproducibility of encoded data

• Quality, reproducibility, value, and patientsafety pertaining to mapping and todifferent versions of encoded data in thesame system

• Development and recommendations ofstandards for coded data (that is, forcomputer-assisted coding)

• Biosurveillance

• Use health informatics data to improvepublic health practices as well as medicalreadiness

Pa rt of the funds would be used to su pporth e a l t h c a re standards in ways that do not rely onrevenue gen era ted by selling the standard st h em s elve s . The aut h ori ty wi ll iden tify the

certi f i c a ti on standards for term i n o l ogies andcl a s s i f i c a ti ons in the EHRs and EHR sys tem sand overs ee the devel opm ent of i m p l em en t a ti ong u i de s . It must have su f f i c i ent aut h ori ty tocoord i n a te ef forts among the va rious agen c i e sand stakeh o l ders to en su re con gru ency andco ll a bora ti on , not com peti ti on .

Roles and Responsibilities of the CentralizedAuthorityThe Task Force applauds the recent formationof the IHTSDO and is fully supportive of thisdevelopment. However, US involvement as acharter member of the IHTSDO will require anentity responsible for overseeing US interests.The Task Force believes the central authoritywould best serve this role. The centralauthority would define the governancestructure for the US role in the IHTSDO andwould oversee the SNOMED national releasecenter in the US, where questions regarding theprocess for requesting of new terms orestablishing regional extensions would beresolved. With the aid of funds mentionedbelow, the US participation process in theIHTSDO will be defined.

The central authority, which will coordinatethe funding of research, standards, grantreview, and contracts, will also haveresponsibility for the stewardship of thefunding noted above. This authoritative bodywill focus on processes for governing,maintaining, and distributing theterminologies and classifications. Itsresponsibility will be to align funding withpolicy and guide the contracts and grantsprocess toward long-term goals.

Central Authority CommitmentThe entity will commit to the adoption ofsound principles for operation of aterminology and classification standardsdevelopment organization. Primary amongthe principles is an infrastructure fordevelopment and maintenance that includes a

17


22. Available at www.jamia.org/cgi/content/abstract/5/6/503.

transparent process with policies andprocedures that can support open standardsand ensure that those who build content areengaged in any consolidation or integration oftheir products. This commitment wouldinclude:

• Simplified coding guidelines andreimbursement regulations so thatmapping rules can be more readilydeveloped and maintained.

• Use case maps from reference terminologyto administrative code sets (for instance,SNOMED CT® to ICD-9-CM, SNOMEDCT® to CPT, and LOINC to CPT) that arevalidated with an easy, no-cost distributionmechanism.

• Educational resources to train healthcareprofessionals on the use and interpretationof coded data and its relationship withclinical terminologies, classificationsystems, and mapping technologies. Sincemuch of this relationship is stillmisunderstood and somewhat difficult tofully grasp, educational resources thatclearly and succinctly describe the mappingprocess and the importance of referenceterminologies and classification systems aretruly needed.

Centralized Authority RelationshipsThe Task Force recommends creating aterminology group made up of both publicand private organizations to assist the centralauthority. This group would be contracted andtherefore not dependent on “voluntary”commitment. It will be responsible forestablishing the standards used for certificationof terminologies and tools.

The Task Force supports the HealthcareInformation Technology Standards Panel(HITSP) basic standards readiness criteria as astarting point for the work of this centralizedauthority. HITSP’s Tier 2 criteria take intoconsideration issues the Task Force identified

as necessary for ridding the development,implementation, and maintenance process ofits complexity and to structure governance in acoordinated fashion.

These criteria were developed to screen thepotential candidate standards, includingterminologies and code sets. They are used byHITSP and its technical committees forevaluating standards for possible use in theHITSP Interoperability Specifications. Tier 2criteria23 are placed into the followingcategories:

• Suitability: the standard is named at aproper level of specificity and meetstechnical and business criteria of usecase(s)

• Compatibility: the standard sharescommon context, information exchangestructures, content or data elements,security, and processes with other HITSPharmonized standards or adoptedframeworks as appropriate

• Preferred Standards Characteristics:approved standards, widely used, readilyavailable, technology neutral, supportinguniformity, demonstrating flexibility andinternational usage are preferred

• Standards Development Organizationand Process: meet selected criteria,including balance, transparency, developerdue process, stewardship, and others

• Total Costs and Ease of Implementation

Role of AHIMA and AMIA

AMIA and AHIMA are committed to a globalapproach to health-related terminologies andclassifications and seeing the recommendationsin this report move forward. Bothorganizations are prepared to engage withothers to accomplish the following next steps:

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23. Standards Readiness Criteria, Tier 2, Version 1.0

• Develop a planning grant. The grantwould continue the work of the Task Forcein partnership with the ONC. AHIMA andAMIA will also coordinate with the HITSPto harmonize work.

• Engage informatics and informationmanagement leaders in increasing theawareness of the interdependencies ofencoding data with terminologies,classifications, and with issues ofreimbursement. It is important tounderstand how encoded data can supportother initiatives such as quality or patientsafety in the healthcare environment.

• Enlist the support of other keyorganizations in these efforts, such as theHHS/Centers for Medicare and MedicaidServices (CMS), including the ONC, largeintegrated healthcare organizations likeKaiser Permanente, Veterans HealthAdministration, National Institutes ofHealth, including the National CancerInstitute and the National Library ofMedicine, foundations such as theCalifornia Healthcare Foundation, largeinsurance organizations such as BlueCross/Blue Shield, and others such as theCertification Commission for HealthcareInformation Technology.

• Create educational resources to trainhealthcare professionals on the use andinterpretation of coded data and itsrelationship with clinical terminologies,classification systems, and mappingtechnologies.

• Broadly publicize these recommendationsto those whose support is needed to adoptthem.

ConclusionThe members of the Task Force believe thestate of terminologies and classifications in theUS is ineffective and in disarray andnecessitates immediate action. The healthcareindustry – including the government,

professional organizations, public and privateinstitutions, and health informatics andinformation management professionals – mustrespond to the chaos and address the issuesbefore the US healthcare system ismarginalized. To not do so would meancontinued reliance on poor-quality data fordecision making and the spending of dollars toretrofit a system that is obviously broken. If thechanges outlined in this paper are not made, itis unlikely the goals of the national healthinformation agenda can be achieved.

Moreover, without question there is a need forworldwide comparability of healthcare data toimprove the effectiveness of global publichealth policies and programs. To meet thisneed a variety of health-related terminologiesand classifications identifying the clinical datais required. However, just having these systemsavailable does not mean the data can be usedand exchanged. The various systems must becoordinated and managed in a synchronizedfashion. Processes for developing, releasing,implementing, and maintaining terminologiesand classifications must be streamlined. Theymust have an effective life cycle infrastructureto improve quality and simplify reliable andmaintainable health data. The recent globalprogress with SNOMED gives special urgencyto this matter for the US. We must get ourcollective house in order; the lack of a coherenthealthcare system in the US and the lack ofprospects anytime soon for a coherent systemcannot be allowed to prevent progress in thisextremely important domain.

Achieving the goal of a well-organized,coordinated health-related terminologies andclassifications governance structure andefficient development, implementation, andmaintenance processes will take time. Theindustry is challenged to continue forwardwhile new approaches are being designed,tested, and funded. An industry dedicated toprompt response and collaborative work canbuild solutions for today’s turmoil and ensurebetter health information management for thenation and the world.

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20


Table 1. Governance of Various Terminology Systems in the United States

Name of Terminology Owner Governance Process

ABC Codes Foundation forIntegrative Healthcare

Terminology development is coordinated throughthe Foundation for Integrative Healthcare (FIHC) andits practitioner association constituents (calledmember associations).

Clinical CareClassification

Virginia Saba Terminology updates are vetted through an AdvisoryBoard.

CDT ADA ADA manages and provides staff to coordinate thetechnical review and revision process. A Code RevisionCommittee composed of re p resentatives from theADA, America’s Health Insurance Plans, the BlueC ross/Blue Shield Association, Centers for Medicare &Medicaid Services, Delta Dental Plans Association, andNational Purchaser of Dental Benefits.

CPT AMA AMA oversees a CPT Editorial Panel that isresponsible for development and maintenance. ThePanel is composed of 15 physicians and two non-physician healthcare professionals appointed by theAMA Board of Trustees.

DSM APA APA Division of Research manages the DSM revisionprocess.

Global MedicalDeviceNomenclature

CEN The European Committee for Standardization body(CEN) owns the copyright, but has delegatedadministration to the Maintenance Agency PolicyGroup (MAPG). MAPG includes representatives fromthe FDA as the US regulatory body, the EuropeanCommunity, the Japanese Ministry of Health, Labour,and Welfare, and five nominees approved torepresent CEN, five nominees approved to representISO interests, and a representative of the GlobalHarmonization Task Force.

HCPCS Level II CMS The CMS HCPCS Workgroup is responsible fordevelopment and maintenance.

ICD-0 WHO WHO Collaborating Centres govern developmentand maintenance.

ICD-10 WHO WHO Collaborating Centres govern developmentand maintenance.

ICD-10-CM NCHS NCHS governs development and maintenance.

ICD-10-PCS CMS The Division of Acute Care within the Center forMedicare Management of CMS governs developmentand maintenance. ICD-10-PCS was developed by 3MHIS under a CMS contract.

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Table 1. Governance of Various Terminology Systems in the United States continued


ICD-9-CMDiseases andProcedures

NCHS and CMS NCHS governs development and maintenance of ICD-9-CM diagnoses; the Division of Acute Carewithin the Center for Medicare Management of CMSgoverns development and maintenance of ICD-9-CMprocedures; American Health InformationManagement Association, American HospitalAssociation, CMS, and NCHS (known as theCooperating Parties) are responsible fordevelopment of official coding guidelines for properuse of ICD-9-CM codes.

ICF WHO WHO Collaborating Centres govern developmentand maintenance.

InternationalClassification ofPrimary Care

Wonca InternationalClassificationCommittee

World Organization of Family Doctors governsdevelopment and maintenance.

LOINC Regenstrief Institute Regenstrief Institute and LOINC Committee governdevelopment and maintenance process. The LOINCCommittee is composed of representatives from anumber of organizations representing both thepublic and private sectors.

MEDCIN Medicomp Systems Medicomp Systems is responsible for maintenanceand development.

MedDRA ICHMSSO

MedDRA Maintenance and Support ServicesOrganization (MSSO) serves as the repository,maintainer, and distributor of MedDRA as well as thesource for the most up-to-date informationregarding MedDRA and its application within thebiopharmaceutical industry and regulators. TheMSSO includes a group of internationally basedphysicians who review all proposed subscriberchanges and provide a timely response directly tothe requesting subscriber.

NANDA NANDA International NANDA is responsible for development andmaintenance.

NDF-RT VA Ongoing development and maintenance issupported under the VA’s Enterprise ReferenceTerminology project.

NDC FDA The Center for Drug Evaluation and Research withinthe FDA is responsible for ongoing development andmaintenance.

NIC University of Iowa University of Iowa College of Nursing, Center forNursing Classification and Clinical Effectiveness isresponsible for ongoing development andmaintenance.

NOC University of Iowa University of Iowa College of Nursing, Center forNursing Classification and Clinical Effectiveness isresponsible for ongoing development andmaintenance.

22



Omaha System Karen Martin Karen Martin is responsible for ongoingdevelopment and maintenance with updates andfeedback from the Omaha System users group.

PerioperativeNursing Data Set

Association ofPerioperative Nurses(AORN)

AORN is responsible for ongoing development andmaintenance.

RxNorm NLM NLM is responsible for ongoing development andmaintenance.

SNODENT ADA The Advisory Committee on Dental ElectronicNomenclature, Indexing, and Classification(ACODENIC) processes requests for modifications andCouncil on Dental Benefit Programs have finalapproval. ACODENIC is composed of representativesfrom all of the recognized dental specialtyorganizations, payers, and the ADA.

SNOMED CT® CAP Within the governance structure of CAP, SNOMEDInternational manages the ongoing maintenanceand continuing evolution of SNOMED CT®. Itaccomplishes this through the SNOMED InternationalAuthority, SNOMED International Editorial Board,and Working Groups. The SNOMED InternationalAuthority has direct responsibility for terminology-related activities. The SNOMED InternationalEditorial Board is responsible for scientific direction,editorial processes, and scientific validity. The Boardis composed of voting members and organizationalliaisons. This process is under revision; currently theprocess is private and the editorial board is closed.

Universal MedicalDeviceNomenclatureSystem (UMDNS)

ECRI ECRI governs ongoing development andmaintenance.

Table 1. Governance of Various Terminology Systems in the United States continued

23


Table 2. Development and Maintenance of Various Terminology Systems in theUnited States

Name of Developer Development and Official Source Release Terminology (private, govt., Maintenance Process for Clarification Schedule

nonprofit, etc.)

ABC Codes Foundationfor IntegrativeHealthcare

FIHC validates requests fornew codes or codemodifications andAlternative Link makes finaldecision.

Alternative Link Updatedannually.

Clinical CareClassification

Virginia Saba Terminology updates arevetted by Advisory Board.

Virginia Saba There is nospecificschedule forupdates andrevisions.Content isrevised asclinicalrequirementschange.

CDT ADA Open meetings, changesvoted on by the CodeRevision Committee.

ADA U p d a t e dbiannually atthe beginningof odd-n u m b e re dyears.

CPT AMA Open meetings, changesvoted on by CPT EditorialPanel.

AMA, AHAprovidesclarification foruse of CPT codesunder hospitaloutpatient PPS.

Category I:January 1 Category II:biannuallyCategory III:January andJuly

DSM APA Open process for input, finaldecisions are made by APA.

APA No schedule.Current versionis DSM-IV-TRand waspublished inJuly 2000. Lastmajor revisionwas in 1994.

GlobalMedicalDeviceN o m e n c l a t u re

CEN Open process for input, final decisions are made by Maintenance AgencyPolicy Group.

Updated atleast annually.

HCPCS level II CMS Open meetings,open process for input.CMS makes the finaldecisions.

Individual payers,AHA pro v i d e sclarification foruse of HCPCScodes in hospitalOPPS.

Some codes areupdatedannually(January 1),others areupdatedquarterly.

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Table 2. Development and Maintenance of Various Terminology Systems in theUnited States continued


nonprofit, etc.)

ICD-0 WHO Current edition wasdeveloped throughcollaboration betweenWHO and the InternationalAgency for Research onCancer (IARC).

WHO No schedule

ICD-10 WHO Changes must be sponsoredby one of the WHOCollaborating Centres forClassification of Disease.

WHO Minor–annuallyMajor–up tothree years

ICD-10-CM NCHS Similar to that for ICD-9-CM. Must conform toconstraints imposed byWHO for use of ICD.

Undetermined Undetermined

ICD-10-PCS CMS Undetermined Undetermined Undetermined

ICD-9-CMDiseases andP ro c e d u re s

NCHS and CMS Open process for submittingrequests for modificationsand for providing publicinput on code pro p o s a l s ;NCHS and CMS have finala p p roval. Four cooperatingp a rties (AHA, AHIMA, CMS,NHCS) develop uniformguidelines for application ofc o d e s .

The AHA centraloffice on ICD-9-CM

October 1;potential existsfor secondupdate to occuron April 1, butthis has notoccurred yet.

ICF WHO WHO Collaborating Centres WHO No schedule

InternationalClassificationof PrimaryCare

WoncaInternationalClassificationCommittee

Developed and maintainedby World Organization ofFamily Doctors (Wonca)International ClassificationCommittee (WICC).

Wonca 11-year cycle

LOINC RegenstriefInstitute

Open Lab LOINC andClinical LOINC meetings;maintained by LOINC Committee.

RegenstriefInstitute

No set schedule,three to fourtimes a year.

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nonprofit, etc.)

MEDCIN MedicompSystems

Developed and maintainedby Medicomp Systems basedon recommendations of ag roup of consulting editorsf rom Cornell, Harv a rd, JohnsHopkins, and other majormedical centers, withsubstantial input from userc o m m u n i t y - b a s e dphysicians.

MedicompSystems

Twice per year

MedDRA ICHMSSO

Core subscribers maysubmit requests for newterms; MSSO makes finaldecision.

MSSO Twice a year—March 1 andSeptember 1

NANDA NANDA Anyone may submit arequest to add a nursingdiagnosis; member inputsought at NANDAconference; NANDA makesfinal decision.

NANDA Every two years

NDF-RT VA VA plans to maintain NDF-RT so that it remains fullyintegrated with RxNorm.

VA Unknown

NDC FDA Drug manufacturers submitrequests for changes; FDAmakes final decision

FDA Quarterly

NIC University ofIowa

Content is added asrequested or needed

University ofIowa College ofNursing, Centerfor NursingClassification andClinicalEffectiveness

Every four years

NOC University ofIowa

Content is added asrequested or needed

University ofIowa College ofNursing, Centerfor NursingClassification andClinicalEffectiveness

Every four years

OmahaSystem

Karen Martin Content is added asrequested or needed.

Karen Martin No publishedschedule

PerioperativeNursing DataSet

AORN Content is added asrequested or needed.

AORN No publishedscheduled

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nonprofit, etc.)

RxNorm NLM NLM adds new clinicaldrugs and links toadditional drugterminologies and to refinethe model in response tofeedback.

NLM Weekly,cumulativemonthly

SNODENT ADA Open process for input andsubmitting requests formodification; AdvisoryCommittee on DentalElectronic Nomenclature,Indexing, and Classification(ACODENIC) of the ADAprocesses suggestionsconcerning changes toSNODENT and forwardsrecommendations formodifications to theCouncil on Dental BenefitPrograms of the ADA forapproval.

ADA Unknown

SNOMED CT® CAP A documented scientificp rocess is followed that focuses on

u n d e r s t a n d a b i l i t y,re p ro d u c i b i l i t y, andusefulness. Content isdefined and reviewed bymultiple clinical editors,with additional expert sconsulted as necessary to review the scientificintegrity of the content. Thequality control process iscontinuously supplementedby feedback from users.

SNOMEDInternational

Biannually–January andJuly

UMDNS ECRI Open process forrequesting changes.

ECRI Updated daily,but officially, itis updatedannually.

Te r m i n o l o g yD e v e l o p m e n t / E d i t i n g / M a i n t e n a n c eTerm i n o l ogy devel opm en t / ed i ti n g / m a i n ten a n ceservices support the formal representation ofconcepts and typically include functions suchas provision of a reference model or set ofreference models using some type ofdescription logic or frame-based approach,automated classification of new terms throughformal subsumption, and data to supportversion control. Some tools (for example,Galapagos) support distributed developmentand resolution of inconsistencies acrossmodelers. These services should support notonly atomic-level concepts and molecularexpressions but also other formal structuressuch as clinical document architectures.

Examples: LexGrid, Medical Entities Dictionary(MED) editor, SNOMED CT® developmenttools, Terminology Development Environment(Apelon), Protégé (ontology development ineither frames or OWL)

Terminology BrowsersTerminology browsers support the viewing(and sometimes editing) of a singleterminology or a set of terminologies.

Examples (single terminology): RegenstriefLOINC Mapping Assistant (RELMA), MedicalEntities Dictionary (MED) browser, CLUE(SNOMED CT®)

Examples (multiple terminologies): LexGrid(Mayo); Knowledge Source Server (UnifiedMedical Language System); Open GALEN;Mycroft (Apelon), Health Level 7 CommonTerminology Services

Terminology MappingTerminology mapping tools support themapping of terms from a source terminology(typically local terminology) to a targetterminology.

Examples (single terminology): RegenstriefLOINC Mapping Assistant (RELMA);SNOMED CT® development tools

Examples (multiple terminologies): LexGrid(Mayo); Open GALEN; Health Level 7Common Terminology Services

Concept-based Indexing and RetrievalThese services support content tagging,indexing and retrieval of document sets.

Examples: Unified Medical Language System(particularly MeSH), Concept-based Indexing& Retrieval Solution (Apelon); Open GALEN;Infobutton Manager (Cimino)

Terminology ImportTerminology import services support theimport of terminologies in a variety offormats, e.g., UMLS, SQL, SQL Lite, HealthLevel 7 Version 3, Protégé.

Examples: LexGrid (Mayo)

Terminology ExportTerminology export services support theexport of terminologies in a variety of formats,(for example, XML, OWL, RDF).

Examples: LexGrid (Mayo)

Natural Language ProcessingNatural language processing tools parse naturallanguage into syntactic and/or semanticstructures and may map parsed terms to astandardized terminology.

Examples: MedLEE (Friedman)

Translation to Natural LanguageNatural language translation services supportthe transformation of a formally representedconcept into one or more natural languagelexical expressions. For example, the sameconcept may be expressed in American English,UK English, and Spanish.

Examples: Open GALEN

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Appendix A: Terminology Services and Tools

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Table 1. Terminology Services and Tools in Four Organizations

Service CUMC2 IHC3 Mayo4 VAMC5

TerminologyDevelopment/Editing/Maintenance

MED 3M HDD LexGrid Apelon TDE/SDSMaint. App.Terminology

Browser MED IHC Search LexGrid Apelon DTS/SDSMaint. App.

Terminology Mapping MED (1:1 only) IHC Match LexGrid ApelonTermWorks

Concept-basedIndexing and Retrieval

InfobuttonManager

IHC Infobutton LexGrid VETS/SDS Read-Only APIs

Terminology Import MED 3M HDD LexGrid VETS

Terminology Export MED 3M HDD LexGrid VETS/DatabaseReplication

Natural LanguageProcessing

MedLEE IHC NLP UIMA/LexGrid

Clinical TerminologyServer1

MED (wordcompletiononly)

3M HDD LexGrid VETS


Appendix A: Terminology Services and Tools continued

Clinical Terminology Server Chute identified a set of nine desideratum for a clinical terminology server: wordnormalization, word completion, targetterminology specification, spelling correction,lexical matching, term completion, semanticlocality, term composition, and termdecomposition.

Relevant LinksApelon, Inc.: www.apelon.com/products

Columbia University Biomedical Informatics:www.dbmi.columbia.edu/

HL7: www.hl7.org

The Lexical Grid:http://informatics.mayo.edu/LexGrid/index.php?page

Medical Entities Dictionary:

http://med.dmi.columbia.edu/

MedLEE - A Medical Language Extraction andEncoding System:http://lucid.cpmc.columbia.edu/medlee/

OpenGALEN Foundation:www.opengalen.org/index.html

The Protégé Ontology Editor and KnowledgeAcquisition System:http://protege.stanford.edu/

SNOMED International: www.snomed.org

Unified Medical Language System KnowledgeSource Server:http://umlsks.nlm.nih.gov/kss/servlet/Turbine/template/admin,user,KSS_login.vm

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Appendix A: Terminology Services and Tools continued

1. Word normalization, word completion, target terminology specification, spelling correction, lexical matching, termcompletion, semantic locality, term composition, and term decomposition.

2. At Columbia University Medical Center of New York Presbyterian Hospital, terminology services are supported through theMedical Entities Dictionary (MED), the Infobutton Manager, and the Medical Language Extraction and Encoding (MedLEE)system. The MED, a concept-oriented terminology, serves as the institutional data dictionary and uses a semantic networkmodel that includes a classification hierarchy. MED-related applications support browsing, development, editing, andmaintenance of the MED as well as terminology import and export. Terminology server functionality of the MED is limited.The Infobutton Manager is built upon the foundation of semantic relationships in the MED and provides context-specificlinks to information resources from within the clinical information systems (for example, at the time of order entry or whenviewing laboratory results). MedLEE provides natural language processing for a variety of functions including decisionsupport. These tools provide a rich foundation upon which to build a broader set of terminology services throughout theenterprise.

3. At Intermountain Healthcare the run time services, terminology database, and basic import and export programs are basedon the Healthcare Data Dictionary (HDD) application provided by 3M Healthcare. The initial design of the software wasdescribed by Roberto Rocha (see “Designing a Controlled Medical Vocabulary Server: The VOSER Project,” Computers andBiomedical Research, 1994.) Intermountain has built search programs and terminology matching programs that extend theoriginal HDD functionality. Intermountain’s Infobutton technology has been written locally, but is based largely on themodel created by Cimino at Columbia. Natural language processing software has been created by Peter Haug andassociated researchers at Intermountain.

4. At Mayo Clinic, production terminology services remains largely done through vendor products (for example,GE/IDX/LastWord). However, the research community is fully supported by LexGrid (http://informatics.mayo.edu). NLP toolswere developed in collaboration with IBM and mounted on the Unstructured Information Management Architecture,though the entire suite remains open source. The LexGrid tools underpin vocabulary maintenance and support at HL7, theNational Cancer Institute’s Biomedical Informatics Grid, and the CDC Public Health Information Network.

5. At the Department of Veterans Affairs, Apelon is used for clinical terminology, but administrative terminology ishomegrown. Terminology services are provided by a combination of VA-developed and commercial products. Currently,clinical and administrative (nonclinical) terminology are modeled, maintained, and deployed separately. Clinical terminologyis modeled and maintained in the Apelon Terminology Development Environment. The VA-developed VHA EnterpriseTerminology Services (VETS) tools to allow analysts to review and deploy terminology to VA sites as well as providing a real-time terminology server. Development and utilization of the terminology services are still in the early stages. Administrativeterminology is developed and maintained in the VA-developed solution called Standard Data Service (SDS) maintenanceapplication. SDS data is stored in a central Oracle database. Applications access the data via read-only APIs, and cache thedata locally in either Oracle or Cache databases. Nightly replication keeps the databases in sync, should any changes occurin the SDS central database. Synchronization with Legacy files will be achieved through HL7 messaging.

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AustraliaThe organization principally involved in theidentification and development of clinical datastandards for use at the point of care inAustralia is the National E-Health TransitionAuthority (NEHTA). NEHTA is a not-for-profit company jointly funded by Australianstate, territory, and national governments. Theboard of NEHTA Limited is composed of chiefexecutives from the health departments in eachof these jurisdictions,24 and NEHTA hasreceived funding of $AUD130M from theCouncil of Australian Governments to establishthe national infrastructure required to supporta national approach to clinical terminologiesand unique health identifiers. As part of itsbroader e-health agenda to accelerate theadoption of IT in the health sector, NEHTA istasked with recommending and wherenecessary developing standards for clinical use.

NEHTA has recommended SNOMED CT®(developed by the College of AmericanPathologists) as the most appropriate andcomprehensive clinical terminology capable ofsupporting a national approach toterminologies in Australia. NEHTA intends tocustomize SNOMED CT® where necessary tomeet Australian needs.25

Classifications for statistical reporting havebeen developed by a number of organizations(including the Australian Health InformationCouncil , and the National Health InformationGroup, which report to the Australian HealthMinisters Advisory Council). The use ofclassifications is prescribed through nationalminimum datasets for reporting, as publishedin the National Health Data Dictionary.Supporting classifications include an Australianextension of ICD-10, designated as ICD-10-AM, which includes the AustralianClassification of Health Interventions, whichhas been developed and is actively maintained

by the National Centre for Classification inHealth (NCCH). NEHTA, the NCCH, and theAustralian Health Ministers' Advisory Councilare all aware of, and are proceeding toward, acooperative rationalization of the development,management, and governance of terminologiesand classifications in Australia.

United KingdomIn April 2002, several key recommendationswere identified for IT in the National HealthService (NHS). These included increased andprotected funding for IT, stringent, centrallymanaged national standards for data, andbetter management of IT implementation inthe NHS. Following this, NHS Connecting forHealth was established in 2005 with theprimary goal of delivering the NationalProgram for IT .

NHS Data Standards & Products (NHS DS&P)is part of the Technology Office of NHSConnecting for Health and is responsible forthe introduction, development, and delivery ofcoding system products used in the patientrecords of the NHS Care Records Service. Theproducts that NHS DS&P are responsible forinclude SNOMED CT®, the Read Codes,Dictionary of Medicine & Devices, ICD-10,OPCS4, and the NHS Data Dictionary. As partof the delivery and ongoing development, NHSDS&P also provides a number of other servicesdelivering codes and data and quality standardsto the NHS incorporating the NationalAdministrative Codes Services, the SpineDirectory Service (SDS), and the InformationQuality Assurance Programme.26

An advantage of the organizational structure inthe United Kingdom is that it is centrallymanaged, which allows Connecting for Healthto inform the NHS about the use ofterminologies and classifications that serve theneeds of the health system.


Appendix B: Australia, the United Kingdom, and Canada

24. National E-Health Transition Authority, www.nehta.gov.au/content/view/1/103.25. Available at www.govhealthit.com/article94797-06-12-06-Print).26. Connecting for Health, www.connectingforhealth.nhs.uk/technical/standards/.

31

CanadaThe Canadian Institute for Health Information(CIHI) is an independent, not-for-profitorganization. CIHI is a focal point forcollaboration among major health players—from provincial governments, regional healthauthorities, and hospitals to the federalgovernment, researchers, and associationsrepresenting healthcare professionals.Governance of the organization is made up ofa board of directors that provides strategicguidance to both CIHI and the HealthStatistics Division at Statistics Canada.

CIHI facilitates data quality and the consistentuse of Coding Standards for ICD-10-CA andthe Canadian Classification of HealthInterventions (CCI) (developed to accompanythe ICD-10-CA) and is advised on these topicsby several committees.27 The National CodingAdvisory Committee provides CIHI withadvice on the development and ongoingenhancement of coding standards. TheClassification Advisory Committee alsoprovides CIHI with advice on the maintenanceand enhancement of ICD-10-CA and CCI.

The National ICD-10-CA/CCI ElectronicProducts Advisory Group provides advice onthe ongoing development of new andenhancement of existing ICD-10-CA and CCIelectronic products. This advisory groupreviews proposals and provides feedback onthe potential impact of changes on coding,data capture, and data quality and sharesinformation and solicits feedback related toICD-10-CA and CCI electronic products withprovincial/territorial end users.

Canada Health Infoway, established in 2001, isa not-for-profit corporation, whose Membersare Canada’s 14 federal, provincial, andterritorial Deputy Ministers of Health.Infoway’s mission is to foster and accelerate thedevelopment and adoption of electronic healthinformation systems with compatible standardsand communications technologies on a pan-Canadian basis. Among its many standards-related initiatives, Infoway is currently leadinga project to evaluate SNOMED CT® as theCanadian standard for reference terminologyfor use in the pan-Canadian Electronic HealthRecord.


Appendix B: Australia, the United Kingdom, and Canadacontinued

27. Ibid.

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Glossary

ABC Codes: A registered vocabulary of HL7incorporated into the National Library ofMedicine’s Unified Medical Language Systemin 1998, describing the procedures, treatments,and services provided during an encounterwith a complementary and alternativemedicine, nursing, and other integrativehealthcare provider.

American Dental Association (ADA): Aprofessional dental association dedicated to thepublic’s oral health, ethics, science, andprofessional advancement.

American Hospital Association (AHA): Thenational trade organization that provideseducation, conducts research, and representsthe hospital industry’s interests in nationallegislative matters.

American Medical Association (AMA): Thenational professional membership organizationfor physicians that distributes scientificinformation to its members and the public,informs members of legislation related tohealth and medicine, and represents themedical profession’s interests in nationallegislative matters.

American National Standards Institute(ANSI): The agency that coordinates thedevelopment of voluntary standards to increaseglobal competitiveness in a variety ofindustries, including healthcare.

American Psychiatric Association (APA): Amedical specialty society with more than35,000 member physicians in the United Statesand abroad who work together to ensurehumane care and effective treatment for allpersons with mental disorders.

ASTM (American Society for Testing andMaterials): a scientific and technicalorganization for the development of standardson characteristics and performance ofmaterials. The charter includes products,systems and services, as well as materials.

ASTM is the largest nongovernment source ofstandards in the US, comprised of more than130 committees that publish 10,000 standardsannually.

Computer-assisted coding (CAC): The useof computer software that automaticallygenerates a set of medical codes forreview/validation and/or use based uponclinical documentation provided by healthcarepractitioners.

CEN (European Committee forStandardization): A set of standards from thevoluntary work of participants representing allinterests concerned (industry, authorities, andcivil society) contributing mainly through theirnational standards bodies.

Centers for Medicare and MedicaidServices (CMS): The division of theDepartment of Health and Human Servicesthat is responsible for developing healthcarepolicy in the US and for administering theMedicare program and the federal portion ofthe Medicaid program; called the Health CareFinancing Administration prior to 2001.

Classification: A system that arrangestogether similar diseases and procedures andorganizes related entities for easy retrieval.

College of American Pathologists (CAP): Amedical specialty organization of board-certified pathologists that owns and holds thecopyright to SNOMED CT®.

Current Dental Terminology (CDT): Acoding system developed to report servicesperformed by the dental profession; formerlycalled the Uniform Code on Dental Proceduresand Nomenclature.

Current Procedural Terminology (CPT®): Acomprehensive list of descriptive terms andcodes published by the American MedicalAssociation and used for reporting diagnosticand therapeutic procedures and other medicalservices performed by physicians.

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Consolidated Health Informatics (CHI): Agovernment initiative that adopts standards fordomains related to health information forfederal health data systems, facilitatingcommunication among all federal healthagencies.

Diagnosis-related Group (DRG): A unit ofcase mix classification adopted by the federalgovernment and some other payers as aprospective payment mechanism for hospitalinpatients in which diseases are placed intogroups because related diseases and treatmentstend to consume similar amounts of healthcareresources and incur similar amounts of cost.

Diagnostic and Statistical Manual ofMental Disorders (DSM): A nomenclature tostandardize the diagnostic process for patientswith psychiatric disorders; includes codes thatcorrespond to ICD-9-CM codes.

ECRI: An independent nonprofit healthservices research agency established to promotesafety, quality, and cost-effectiveness inhealthcare to benefit patient care throughresearch, publishing, education, andconsultation; formerly called the EmergencyCare Research Institute.

Food and Drug Administration (FDA):Federal agency responsible for protecting thepublic health by ensuring the safety, efficacy,and security of human and veterinary drugs,biological products, medical devices, thenation’s food supply, cosmetics, and productsthat emit radiation.

Foundation for Integrative Healthcare(FIHC): A nonprofit foundation established in1999 that, along with its practitionerassociation constituents, coordinatesterminology development in ABC codes.

Free for use: The material is not copyrightedand no license is needed.

Health Insurance Portability andAccountability Act (HIPAA): The federallegislation enacted to provide continuity ofhealth coverage, control fraud and abuse in

healthcare, reduce healthcare costs, andguarantee the security and privacy of healthinformation.

Health Level Seven (HL7): An organizationthat develops standards regarding clinical andadministrative data and is accredited by theAmerican National Standards Institute.

Healthcare Common Procedure CodingSystem (HCPCS): A three-level classificationsystem introduced in 1983 to standardize thecoding systems used to process Medicare andMedicaid claims.

Healthcare Information TechnologyStandards Panel (HITSP): A cooperativepartnership between the public and privatesectors for the purpose of achieving a widelyaccepted and useful set of standards specificallyto enable and support widespreadinteroperability among healthcare softwareapplications.

Hypertext transport protocol (HTTP): Thecommunications protocol that enables use ofhypertext linking.

International Classification of Diseases—Oncology (ICD-O): A classification systemused for reporting incidences of malignantdisease.

International Classification of Diseases,Ninth Revision, Clinical Modification (ICD-9-CM): A classification system used in theUnited States to report morbidity information.

International Classification of Diseases,Tenth Revision (ICD-10): The most recentrevision of the disease classification systemdeveloped and used by the World HealthOrganization to track morbidity and mortalityinformation worldwide.

International Classification of Function,Disability, and Health (ICF): A classificationsystem released by the World HealthOrganization in 2001 that describes howpeople live with their health conditions.

International Organization forStandardization (ISO): The world’s largestdeveloper of standards whose principal activityis the development of technical standards thatoften have important economic and socialrepercussions.

Logical Observation Identifiers, Names,and Codes (LOINC®): A database protocoldeveloped by the Regenstrief Institute forHealthcare aimed at standardizing laboratoryand clinical codes for use in clinical care,outcomes management, and research.

MEDCIN®: A proprietary clinical terminologydeveloped as a point-of-care tool for electronicmedical record documentation at the time andplace of patient care.

Medical Dictionary for RegulatoryActivities (MedDRA): A vocabularydeveloped as a pragmatic, clinically validatedmedical terminology with an emphasis onease-of-use data entry, retrieval, analysis, anddisplay, with a suitable balance betweensensitivity and specificity, within the regulatoryenvironment.

NANDA: A classification of nursing diagnosesadopted by the North American NursingDiagnosis Association. This system describespatients’ reactions to diseases rather thanclassifying the conditions of diseases anddisorders.

National Center for Health Statistics(NCHS): The federal agency responsible forcollecting and disseminating information onhealth services utilization and the health statusof the population in the United States.

National Drug Code (NDC): A code set usedfor medical codes maintained and approved bythe FDA; the code set designated by theDepartment of Health and Human Services forreporting drugs and biologics on standardretail pharmacy transactions.

National Committee on Vital and HealthStatistics (NCVHS): A public policy advisoryboard that recommends policy to the NationalCenter for Health Statistics and other health-related federal programs.

Nationwide Health Information Network(NHIN): The United States’ vision for anational health information infrastructure thatmakes secure transmission of person-specifichealth information from one location toanother. NHIN is synonymous with thenational health information infrastructure.

Drug File Reference Terminology (NDF-RT): A nonproprietary drug referenceterminology that includes drug knowledge andclassifies drugs, most notably by mechanism ofaction and physiologic effect.

Nursing Interventions Classification (NIC):A standardized classification of interventionsthat nurses do on behalf of patients in all caredomains.

National Library of Medicine (NLM): Theworld’s largest medical library and a branch ofthe national institutes of health.

Nursing Outcomes Classification (NOC):A standard i zed cl a s s i f i c a ti on of o utcom e sdevel oped for use in all set ti n gs and with allp a ti ent pop u l a ti on s . It was devel oped toeva lu a te the outcomes of nu rsing interven ti on s .

Prospective Payment System (PPS): A typeof reimbursement system based on presetpayment levels rather than actual charges billedafter a service has been provided; specifically,one of several Medicare reimbursementsystems based on predetermined payment ratesor periods and linked to the anticipatedintensity of services delivered as well as thebeneficiary’s condition.

RxNorm: A nonproprietary terminologydeveloped by the National Library of Medicinethat represents drugs at the level of granularityneeded to support clinical practice.

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35


Systematized Nomenclature of Dentistry(SNODENT): A comprehensive taxonomy thatcontains codes for identifying not only diseasesand diagnoses, but also anatomy, conditions,morphology, and social factors that may affecthealth or treatment.

Systematized Nomenclature of MedicineClinical Terms (SNOMED CT®): Asystematized, multi-axial, and hierarchicallyorganized controlled terminology developed bythe College of American Pathologists.

Standards development organization(SDO): A private or governmental organizationinvolved in the development of healthcareinformatics standards at a national orinternational level.

Terminology, clinical: A set of standardizedterms and their synonyms that record patientfindings, circumstances, events, andinterventions with sufficient detail to supportclinical care, decision support, outcomesresearch, and quality improvement.

Unified Medical Language System (UMLS):A mu l ti p u rpose re s o u rce that inclu des con cept sand terms from many different devel opeds o u rce voc a bu l a ri e s .

Universal Medical Device NomenclatureSystem (UMDNS): A standard internationalnomenclature and computer coding system formedical devices; developed by ECRI.

World Health Organization (WHO): TheUnited Nations specialized agency created toensure the attainment by all peoples of thehighest possible level of health; theinternational organization responsible for anumber of international classifications,including The International StatisticalClassification of Diseases & Related HealthProblems (ICD-10) and The InternationalClassification of Functioning, Disability &Health (ICF).

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