What do clinical data standards mean for clinicians? Dr Nick Booth GP and Informatician, Warden, Northumberland, UK

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1 What do clinical data standards mean for clinicians? Dr Nick Booth GP and Informatician, Warden, Northumberland, UK

2 Outline of Presentation Assertions What are we trying to do in the English NHS IT programme? Single Solution or interoperability? Interoperability what sort? Types of interoperability Linking the achievements of the English Programme to progress in interoperability Challenges Clinical Interoperability delivering Clinical benefits? Which standards have we got to play with? What about the end users Communities of practice Simplifying the challenges

3 Assertions The key role of international standards in health care is to enable interoperable health records A key goal of the English NPfIT is to deliver benefit through interoperable health records We want to create a new clinical records service to support clinical care in an evolving NHS

4 What are we trying to do? To support a change in the nature of clinical care Longevity Significance of long term illness More focus on prevention More focus on clinical safety More focus on the quality/evidence base Finite budgets for health expenditure Commoditising expertise?

5 Reconfiguring clinical services The Intel-Bainbridge Slide

6 If we adopt appropriate clinical and technical standards, we can: Share data, information, knowledge and wisdom more effectively Benefit increasingly from many newer, smaller players in the health IT software market Use 21 st Century IT effectively, efficiently and affordably

7 Single solution or interoperability? Compare NME with London Programmes for IT

8 NME Lorenzo Millenium Being rolled out as a hospital clinical system To include Mental Health functionality GP functionality being written Goal is for a single instance wide Detailed Care Record TPP Systm One Single Instance GP system at PCT level Includes Community and Prison functionality

9 London LSP technical architecture

10 Clinical Data Standards help deliver clinical benefits through interoperability The NHS is evolving and changing Care records available wherever appropriately needed Recognisably ordered and structured Avoid duplication Prevent error especially in medication Encourage best high quality practice Re-use information for public health, research and planning Reduce overall costs by providing clinical content at the NHS wide level Prevent system lock-in Plug and play!

11 What sort of interoperability? Functional interoperability Syntactic interoperability Semantic interoperability

12 Layers of interoperability Functional interoperability & PDF, PACS Supports human comprehension Delivers many of the patient level benefits associated with information sharing Syntactic interoperability Shared information models, shared consistent terminologies critical dependence on design of information models and mapping between applications Supports limited machine comprehension, delivering further benefit Semantic interoperability Vision of a single knowledge model can hold medical information in a meaningful way. Concepts and contexts convey absolute meaning Opens door to next generation of knowledge management

13 Step 1 functional interoperability Needs: Infrastructure Network Messaging services Infrastructural services Unique identifiers Catalogues of services

14 functional NPfIT services 1 Connection to N sites including pharmacies Staff registration process people register each day to use NHS systems 1.2 m have access, all GP practices Personal Demographics Service 1.4 million patients, enabling letters to be posted to the correct address and patient information to be handled more efficiently. Digital x-rays and scans (PACS) 127 systems focus now on sharing between hospitals Choose and Book 18 million bookings to date 3500 per day Electronic prescription service 240m to date, 6821 practices engaged Summary Care Record uploads GP 2GP transfers, 5172 practices engaged

15 syntactic Step 2 syntactic interoperability Needs Infrastructure Network Messaging services Infrastructural services Unique identifiers Catalogues of services Shared information models, shared consistent terminologies critical dependence on design of information models and mapping between applications

16 syntactic NPfIT services 2 Connection to N sites including pharmacies Staff registration process 15,500 people register each day to use NHS systems 1.2 m have access, all GP practices Personal Demographics Service 1.4 million patients, enabling letters to be posted to the correct address and patient information to be handled more efficiently. Digital x-rays and scans (PACS) 127 systems focus now on sharing between hospitals Choose and Book 18 million bookings to date 3500 per day Electronic prescription service 240m to date, 6821 practices engaged Summary Care Record uploads GP 2GP transfers, 5172 practices engaged

17 semantic Step 3 semantic interoperability Needs: Infrastructure Network Messaging services Infrastructural services Unique identifiers Catalogues of services Shared information models, shared consistent terminologies critical dependence on design of information models and mapping between applications Vision of a single knowledge model which can hold medical information in a meaningful way. Concepts and contexts convey absolute meaning

18 semantic NPfIT services 3 Connection to N sites including pharmacies Staff registration process 15,500 people register each day to use NHS systems 1.2 m have access, all GP practices Personal Demographics Service 1.4 million patients, enabling letters to be posted to the correct address and patient information to be handled more efficiently. Digital x-rays and scans (PACS) 127 systems focus now on sharing between hospitals Choose and Book 18 million bookings to date 3500 per day Electronic prescription service 240m to date, 6821 practices engaged Summary Care Record uploads GP 2GP transfers, 5172 practices engaged

19 Delivering more clinical benefits with semantic interoperability

20 Clinical Data Standards the benefits of semantically interoperable data The NHS is evolving and changing Care records available wherever appropriately needed Recognisably ordered and structured Avoid duplication Prevent error especially in medication Encourage best high quality practice Re-use information for public health, research and planning Reduce overall costs by providing clinical content at the NHS wide level Prevent system lock-in Plug and play!

21 Which standards? Technical standards Terminology (SNOMED-CT) Classifications (OPCS, ICD) Messaging standards (HL7) Content and architectural standards (CEN 13606, OpenEHR) Professional standards Notes (summary, admission, handover, discharge) Structure and linkage of records Data migration mappings and guidance Creating the content Infrastructural standards Demographics Access control Identifiers

22 The challenges The information requirement is the prime driver of data collection Not a single coherent set of standards Standards are immature Ambiguity where standards intersect and overlap Multiple perspectives on the same problem Several distinct sorts of end-user More than one discourse Clinical professional Technical Informatics. Professional engagement Communities of practice Content design Federation of content Governance

23 From creating health data to communicating health information Spectrum of health information: Data Information Knowledge Wisdom One view of the DIKW hierarchy (Clark, 2004)

24 The challenges The information requirement is the prime driver of data collection Not a single coherent set of standards Standards are immature Ambiguity where standards intersect and overlap Multiple perspectives on the same problem Several distinct sorts of end-user More than one discourse Clinical professional Technical Informatics. Professional engagement Communities of practice Content design Federation of content Governance

25

26 What is enough for interoperability of information? Terminology Standard representation of health related concepts and drugs NHS has picked SNOMED-CT and DM+D

27 What is enough for interoperability of information? Terminology Standard representation of health related concepts and drugs NHS has picked SNOMED-CT and DM+D Message Implementation Models Containers to send health information safely from one application or service to another Semantically safely Superset of information models? Clinical Content models Clinical information to populate the health related applications and services of an enterprise Is the enterprise a trust or the NHS? Logical Clinical Models Models to semantically define an enterprise-wide clinical information retrieval schema Provides constraint at the Enterprise level Potentially offers long term convergence of information models used in an enterprise or National Health Enterprise Health Service Administration categories Categorises health related concepts for the purposes of managing a health service Includes ICD-10, OPCS, HRGs May need other CDS items to help derive complete sets of management information

28 Overlap and immaturity of technical standards Messaging Model (HL7 v3) HL7 CDA Terminology Model (SCT) EHR extracts (CEN13606) Clinical Information Models

29 The challenges The information requirement is the prime driver of data collection Not a single coherent set of standards Standards are immature Ambiguity where standards intersect and overlap Multiple perspectives on the same problem Several distinct sorts of end-user More than one discourse Clinical professional Technical Informatics. Professional engagement Communities of practice Content design Federation of content Governance

30 Who has a valid perspective? Clinical Management Patient/carer Teaching Social care Research Public Health NHS/DH the press?

31 The challenges The information requirement is the prime driver of data collection Not a single coherent set of standards Standards are immature Ambiguity where standards intersect and overlap Multiple perspectives on the same problem Several distinct sorts of end-user More than one discourse Clinical professional Technical Informatics. Professional engagement Communities of practice Content design Federation of content Governance

32 The clinical problem Clinical information has taken a back seat compared to the information requirements needed to support NHS reimbursement models especially for the hospital sector Clinical information requirements for the NHS have not been clearly semantically defined And the semantics of clinical data is described in arcane and inaccessible constructs There is a gulf between practising clinicians who want to do audit or research on their clinical data, and the information experts defining the data structures defined in the National Programme

33 At least two streams of Data Clinical Administrative And at least how many recipient groups? Clinicians Managers Public Health Patients Research

34 Newcastle University Business School

35 This requires the creation and maintenance of a terminology in a languaging community. Clinical Models Content Publishers The clinician and the patient perform a joint act of publication so that information may be shared in a clinical community. Clinical Community

36 Clinical Models Management Models Content Publishers Management Community Information sharing for the purposes of service management and the governance of practice represents another languaging community Clinical Community

37 Metacontent Publishers Clinical Models Management Models Social Care Models Social Care Community Content Publishers Management Community Social Care and Clinical Care also need to share information forming yet another languaging community. Clinical Community

38 Model Broker Catalogue of Models Metacontent Publishers Clinical Models Management Models Social Care Models Other Models?? Social Care Community Content Publishers Management Community Information sharing and care coordination in health and social services are dynamic processes requiring dynamic infrastructure. Clinical Community

39 Simplifying the challenges SNOMED CT is hard Detailed clinical models are very difficult to share amongst legacy systems Early progress with CEN13606 / OpenEHR and archetypes Clinical discourse can simplify the clinical model challenges At least in general practice But we do need multiple clinical discourses in multiple communities of practice and then to understand the sharing requirements

40 Why not? Define which clinical models need sharing across multiple platforms Focus on a generic clinical model for clinical information retrieval across the service Work on timelines for implementation of SNOMED-CT interoperability across the service for a limited number of use case driven information requirements: Medication Allergies and ADRs Immunisations..and build up

41 Semantic data types clinicians need (the core semantics of clinical information) USE / STRUCTURE Reason for encounter Symptom Problem Diagnosis Order / request Result Prescription Administered medication Goal Allergy/ADR Remember clinical concepts can exist in more than one of these categories

42 Summary Technical standards need to mature a case for simplification? Tension between standardisation and localisation Avoiding conflating models Using interoperability wisely Deliver the low hanging fruit Achieving maturity of the clinical discourse within the technical programme Communities of practice include colleges and associations for governance sign-off

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