Information Standards and Chronic Disease Management

1. Information Standards and Chronic Disease Management Professor Martin Severs FRCP FFPHM

2. Presentation • Personal Perspective for this conference; taking a patient centred view • Background • Business Requirements and Weltanschauung [world view] • Information and Data Requirements • Information Standards suggested

3. Background

4. The Nature of Society • Ageing Society • Chronic disease is the norm • Multiple chronic diseases are very common in the older adult • Plurality of service providers and a plurality of services • Increasingly blurred line between participation, disability, impairment and prevention services eg Health and Social Services

5. What are NHS information Standards? • NHS Information Standards areinformation and communication technologies which achieve interoperability between independent computer systems [functional interoperability] and between independent users particularly patients, clinicians, and managers [semantic interoperability]

6. Components of an operational information standard Requirement Specification Organisational I.G. Conformance Criteria Technical I.G. Conformance Criteria Clinical/User I.G. Conformance Criteria NOTE: Information standards are focused on implementation, interoperation and safety

7. What is Health Informatics? • Health Informatics is the intersection of People, Technology, Organisations and Information • Health informatics is focused on effective implementation

8. Business Requirements

9. Patient as a Partner • Language is as vital to the physician’s art as the stethoscope or the scalpel. A doctor begins by examining the words of his patient to determine their clinical significance. He then translates the words into medical language, describing how the condition came to be, what it means, and how it may evolve. Of all the words the doctor uses, the name he gives the illness has the greatest weight. It forms the foundation of all subsequent discussion, not only between doctor and patient but also between doctor and doctor and between patient and patient. • Groopman J. Hurting all over. New Yorker 2000;13 Nov:78.

10. Patient as a Partner • Expert Patient: Patient as an ‘actor’: caring & making decisions about their own health • Patient Choice: Patient access to information and knowledge to make choices • Customisation of care based on patient needs and values • Patient as the source of control • Patient should have unfettered access to their own health data • NHS Policy and from IOM report: Crossing the Quality Chasm: A new Health System for the twenty first millennium

11. Digital Environment • Maximise automatic processing by computers • Minimise human translation and re-recording • Be present and effective at the point of care where ever that may be! • Be maintained and perform as a safety critical system in line with ITU or theatre • Support a low training overhead • Integrate and different applications be almost seamless to the user • Must support high information usefulness Shaunnessy Equation: Usefulness = relevance x validity / work to get it

12. Prime Purpose is Patient Care • Support • Detailed note keeping by clinicians • The faithfulness of the notes over time and across various systems eg content and context • The ordering and scheduling of activities for patient care • The incorporation of investigation and other results • The incorporation of patient input • Communication between clinicians; clinicians and patients • Best professional record and communication practice • Legal and Regulatory scrutiny • Complaint investigation eg have a clear audit trail • Knowledge and decision support

13. National Value Added [Secondary] Services • Derived automatically from the record if at all possible • Payment of individuals or organisations • Accreditation/Appraisal of individuals or organisations • Public Scrutiny of existing policy by government or agents • Informing new policy • National monitoring; performance; natural disaster etc • Epidemiological research

14. New Actors • Some Computer Applications are ‘Actors’ • These are agents which undertake transformations/activities • Examples would include: • Decision Support Services • E-Care Pathways etc An e-Care Pathway is a machine based resource which can be used in the electronic record by the clinician and patient to derive a situationally specific plan for a given patient assuming the current state of knowledge

15. Information and Data Requirements

16. Perspectives on Information • Requirement in the machine environment for the three perspectives to integrate • Patient Specific: The information necessary for the care of an individual citizen • Knowledge-Based: The information derived from the scientific knowledge base • Secondary uses: The information used for supporting analysis and decisions on policy, performance and populations

17. Data: ‘Uniform Data Standards’ • According to NCVHS (2000), essential features include – Interoperability – any data source must be able to exchange data with any other – Data comparability – meaning of data must be consistent [Public; Team; Profession; Discipline] – Data quality – data must be collected consistently, reliably, etc. • Medicine should have “fewer words, more meaning” like air traffic controllers and military • (Voytovich, 1999)

18. Significant Safety Component • Data standards are only effective when implemented effectively: • Appropriate choice of standard • Effective incorporation into systems • Effective deployment of systems in the work place [or robust and reliable work-rounds] • Effective staff/clinical use • AND standard safety testing at all stages

19. Information Standards recommended

20. Patient Record Access Standard • Two Health Record and Communication Practice Standards • Sharing Standard (Example) • Everything in or from a patient’s record including communications should be shared with them in real time • The only exceptions should be explicitly stated professional standards and/or legal requirements • Issue Resolution Standard • Error management [Patient and clinician agree wrong] • Conflict management [One partner agrees one disagrees] • Disclosure issue [clinician feels x should be disclosed patient feels it shouldn’t]

21. Why share a core record with the patient • Reg Berkshire, a patient who sat on The Copying letters to patients work group, said "getting bad news is bad; getting it late is worse". • When would you want to find out what was wrong with you? • Richard Fitton 01.11.05

22. Patient Record Input Standard • Health Record and Communication Practice Standard • Patients should be able to input directly into their own records concerning preferences and choices • Patients should be able to input directly into their record the data that has been accumulated through competent collection and input • Exceptions would include those captured in law and/or those published by or through Regulatory Bodies eg those lacking capacity

23. Health Record and Communication Practice Standards • Some national professionally endorsed and citizen understood standard definitions for record terms with: • Primary and secondary uses • Needed Nationally • Could be subject to perverse behavioural incentives • Examples: Myocardial Infarction & Diagnosis

24. Health Record and Communication Practice Standards • Some Team and some profession based standards: • End dates; are you ever cured of cancer? Or asthma? • Minimum communication content; what is someone’s current medication? • Uncertainty and laterality; are there any professional constraints?

25. Data Content Standards • Common Terminology both for clinical content and also for the health system [SNOMED CT plus Dictionary Medicines and Devices (DM&D) plus ?] • Professional and Technical Standard for grammatically constrained clinical phrases or several standards that are machine recognisable and interoperable. {Pre-co-ordination, post co-ordination [SMOMED CT]; Archetype methodology [ENV13606]; Clinical statement model [HL7 v3].

26. Data Content Standards • Standard set of units and values eg UCUM • Method for representing complete aliquots of information ie those components that are signed as a single entity • Scales • Measures • Progress note entries • Clinical Documents • Results • Communications

27. Temporal Abstraction Standards • The temporal abstraction is a knowledge model which has to interact with the terminology concept model and the record model(s) • There are three types of temporal abstraction • Calculated Abstraction • Subsumption abstraction [eg all types of asthma] • Inference Abstraction [eg probable asthma and those with nocturnal wheeze] • A common way of expressing the data required for another purpose: • A Central Return • A National Audit • A payment system based on care

28. Potential Components of a Temporal Abstraction • A specific Temporal Abstraction could have: • A name • Components: • Data item • Information type [linked to record model] • Defining human readable expression • Defining machine readable expression based on the national terminology eg SCT and specific associations eg directory content and any clinical phrases as expressed in the logical record model • Process for computation • Associated Professionally endorsed and citizen expected definitions [if different from those in the human readable expression above]

29. Other Standards • Communication Standards: HL7 V3 • Information Governance standards: care record guarantee • At national level with a plurality of service providers and a need for safe, effective, timely and appropriate implementation. There is a growing body of opinion that suggests one needs a common method for expressing data requirements that will interoperate with any physical data architecture • A Logical Record Model

30. SUMMARY

31. Information Standards for Chronic illness Root Records Documents Sections or propositional attitudes Presentation data Clinical Statements [simple and complex] Clinical [SNOMED CT] & Health System Terminology Weights, measures and units Definitions

32. The Integration of Data Standards and the Stakeholder Community Policy & Analysis Patients and Clinicians Suppliers and IT leaders Societal Context; The public

33. The Integration of Data Standards and the Stakeholder Community Secondary Uses Temporal Abstraction Standard Method Policy & Analysis Logical Record Model Standard Patients and Clinicians Suppliers and IT leaders Health Record &Communication Practice Standards Information Governance Standards Societal Context; The public