Building blocks of health information: Classifications, terminologies, standards
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1 Global GS1 Healthcare Conference June 2010, Geneva Switzerland Building blocks of health information: Classifications, terminologies, standards Bedirhan Ustün & Nenad Kostanjsek WHO Geneva 1
2 WHO FIC = data standards for health information Data Standards Data Generation Compilation, analysis, synthesis Dissemination & communication Data use ICD Deaths Diseases ICF Disability Functioning Census Population Surveys Civil Registration Individual Records Service Records Resource Records Extract Analyse Integrate Data Reports, Queries, Events & Alerts Dashboard Data Users Using Evidence for Decision Making National Disability Authority National Public Health Official DPO Official District Health & Social Service Officer International M&E officer Service provider Population Based Service Case Based Civil Society 2 Policies, Resources and Processes
3 Information challenges in health care practice Physician diagnosis & interventions Physician documentation Nurses diagnosis & interventions Nursing documentation Physiotherapist diagnosis & interventions PT documentation Social worker SW Interventions PT documentation Patient Occupational therapists diagnosis & interventions OT documentation 3
4 4 District S4 District S3 District S2 Governorate North Governorate East Governorate West District S1 District W1 District W2 District W3 District W4 District E4 District E3 District E2 District E1 District N1 District N2 District N3 District N4 Support Services Primary Health Care Planning & Information Nursing Services Medical Services Management Services Internal Audit Human Resources for Health Hospital & Lab Services Financial Resources Drug & Medical Supplies Disease Control & Prevention National Health System in Context Transportation Public Affairs Public WorksHousing Social Welfare Tourism and Culture Trade & Industry Natural Resources Marine Resources Local Government Lands Labor Internal Affairs Information & Media Justice Health Foreign Affairs Finance Energy and Power Agriculture A National Goverment Governorate South
5 Health information challenges DATA SOURCES: Increasingly complex and multiple sources Heterogeneous: Variations in conceptual frameworks Incomplete: not the whole population is covered Non-comparable: no mechanism to assure that entities/properties are comparable DATA PROCESSING: Aggregation Which public health indicators? Relevant concepts are not agreed upon How do you combine data? Different sources of data & logic not fully specified - transparent Mechanisms not automated: Meta data and other relevant structured formalism are not fully specified input output specifications: Norms and standards are not fully identified QUALITY: Reliability and Quality Assurance Possible error sources Coverage & completeness Possible duplication and delay Audit trails PARTICIPATION: involvement and empowerment of citizens Privacy Protection Prevention of misuse 5
6 Health Information Systems Requirements for Digitalization Common terminology ontology Universal descriptions for genes, molecules, cells, diagnostic methods, signs, symptoms, interventions and other entities. Common structure Information models Disease, disability, risk factors, interventions Common reporting methods casemix groupings resource groupings outcome measurement systems. 6
7 Constraints in the real world Human variability People can t always interoperate Machines will never interoperate better than the people that use them Too many requirements so priorities unclear Intimately intertwined with EHRs, Public health, Decision support, Clinical care Poor match of problem space & solution space Poor definition of purpose What s it for? 20 years of intensive work in IT has not yet provided a solution Temptation to do more than is possible 7
8 WHO classification development in the 20 th Century Construction of ICD-10 & ICF: ICD: 8 Annual Revision Conferences ( ) ICF: 7 int. & 38 nat. Revision Conferences ( ) ICD: Countries participated 1-5 person delegations mainly Health Statisticians ICF: 61 Countries participated 1-5 person delegations Multi-disciplinary Manual curation List exchange Index was done later "Decibel"? Method of discussion ICF: Concept driven Output: Paper Copy Work in English only ICD: Limited testing in the field ICF: drafts translated into / tested in 27 languages post-coordinated development of linkages to related classification, terminologies and assessment instruments 8
9 Placing WHO Classifications in HIS & IT of the 21 st Century ICD ICPS KRs Mappings ICF ICHI ICTM e-health Record Systems Terminologies Classifications Population Health Births Deaths Diseases Disability Risk factors Clinical Decision Support Integration of care Outcome Administration Scheduling Resources Billing Reporting Cost Needs Outcome 9
10 The desiderata for a WHO FIC in 21st Century Evolve a multi-purpose and coherent classification which is consistent yet adaptable and interoperable across different uses (public health, service management, research) the spectrum of health care (Primary, Secondary, Tertiary) in developing and developed countries compatible with other WHO classifications Serve as an international and multilingual reference standard for scientific comparability and communication purposes Ensure that ICPS will function in an electronic health records environment. Link WHO FIC logically to underpinning terminologies and ontologies (e.g. SNOMED, GO, ) WHO FIC categories defined by "logical operational rules" on their associations and details 10
11 WHO FIC deliverables 1. Print versions "fit for purpose" in multiple languages 2. Web Portal that allows to access and browse the classification with definitions, descriptive characteristics and semantic linkages with other WHOFIC classification and related terminologies maintain and update classification using a Collaborative Authoring Tool with established workflows 3. formalized language: Logical and machine readable knowledge representation of WHO classification entities (concepts with attributes) and their relationships 11
12 Use cases Key workstreams & elements for developing WHO FIC Content model (parameter & value set) Population & peer review of content model Web based collaborative authoring tool (icat) Ontology development 12
13 Use Cases Who are the users: ( Actors, settings, instances ) How do they currently use classifications? Inputs Process Outputs What can be done to improve the use? Identify requirements for WHO FIC 13
14 What is a Content Model (CM)? Captures the key parameters for the definition of an classification entity What is a concept entity in a classification? How do you define it: basic attributes? What different values it can take? in a standard & systematic way 14
15 What is a CM Parameter? A group name for Common Characteristics / Attributes Which describes a particular component or perspective kind, scope, size, location, origin,... Useful to understand the entity mentally and define it in an unambiguous way Refer to the entities in a systematic way Allow sorting into classes, grouping, indexing, searching... Useful to teach computers (also humans!!) 15
16 Example Parameters Symptoms and Manifestations signs, symptoms and findings Etiology underlying explanatory mechanism(s) Course and Outcome distinct pattern of development over time 16
17 What is a Value Set? This list of possible terms or options within each parameter Every word, phrase, or statement that can be used by a computer and a human to describe a diagnostic entity or intervention 17
18 Example Value Sets Body Systems Cardiovascular System Digestive System Endocrine System Integumentary System Musculoskeletal System Neurological System Reproductive System Respiratory System Urinary System 18
19 Why do we need a Content Model? To organize knowledge in a consistent, structured way To facilitate efficient and productive drafting To prepare for computerized terminologies and ontologies Electronic Health Records To ensure the most useful document for end-users 19
20 ICD 11 is no longer just lists it is based on a content model 20
21 ICD 11 Foundation Component and Linearizations ICD-11 content model parameters - Definitions, synonyms - Clinical descriptions - Manifestation Attributes - Causal mechanism & risk factors - Functional impact Value Set Linearizations Mortality Specialty Adaptation Primary Care Morbidity SNOMED-CT, International Classification of Functioning, Disability and Health (ICF), International Classification of External Causes of Injury (ICECI) 22
22 Populating and reviewing the content model Managing Editor Postmaster Filter Peer Review Min 3 reviews 2 approvals TAG Review Other TAGs RSG 23
23 Web based collaborative authoring tool (icat) display & browse taxonomy with its content model rubrics allow user to comment on the content allow users editing the content and facilitate the use of value sets derived from other classifications and terminologies allow user restructuring the classification Incorporates multiple level of user access supports multilingual representation ontology tooling interface with description logic technology 24
24 ENTITIES: An Ontology for WHO FIC categorization of information using a standardized set of concepts with agreed definitions Uniquely identifed terms based on explicit attributes/values RELATIONS: relationships between the key concepts 25
25 ICPS Incident Concept as proposed in ICPS categorial model 26
26 What difference ontologies can make? Coding cycling accident in ICD-10 V12.24 Pedal cyclist injured in collision with two- or threewheeled motor vehicle, unspecified pedal cyclist, non-traffic accident, while resting, sleeping, eating or engaging in other vital activities 27
27 The history of cycling codes 1972 ICD-9 (E826): 8 codes READ-2 (T30..): 81 codes READ-3: 87: 82 codes 1999 ICD-10: 587 codes 28
28 Defusing the exploding bicycle: 500 codes in pieces 10 things to hit Pedestrian / cycle / motorbike / car / HGV / train / unpowered vehicle / a tree / other 5 roles for the injured Driving / passenger / cyclist / getting in / other 5 activities when injured resting / at work / sporting / at leisure / other 2 contexts In traffic / not in traffic V12.24 Pedal cyclist injured in collision with two- or three-wheeled motor vehicle, unspecified pedal cyclist, nontraffic accident, while resting, sleeping, eating or engaging in other vital activities 29
29 Conceptual Lego it could be... Goodbye to picking lists Structured Data Entry File Edit Help Cycling Accident What you hit Your Role Activity Location 30
30 WHO classification development in the 21 th Century Internet-based permanent platform All year round Open to all people in a structured way Content experts & users are empowered Digital curation Wiki enabled collaboration Ontology based Enhanced discussion & peer review Electronic copy print version Work in multiple languages field tests Based on Use Cases 31
31 What is the answer?... what is the question? Computers are useless. They can only give you answers. Pablo Picasso ( ) 32
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