Transcript Information Standards and Chronic Disease Management

Information Standards and
Chronic Disease Management
Professor Martin Severs FRCP
FFPHM
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
Background
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
What are NHS information
Standards?
• NHS Information Standards are
information and communication
technologies which achieve
interoperability between independent
computer systems [functional
interoperability] and between
independent users particularly patients,
clinicians, and managers [semantic
interoperability]
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
What is Health Informatics?
• Health Informatics is the intersection of
People, Technology, Organisations and
Information
• Health informatics is focused on effective
implementation
Business Requirements
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.
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
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
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
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
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
Information and Data
Requirements
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
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)
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
Information Standards
recommended
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]
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
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
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
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?
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 coordination [SMOMED CT]; Archetype
methodology [ENV13606]; Clinical statement
model [HL7 v3].
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
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
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]
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
SUMMARY
Information Standards for Chronic
illness
Root
Records
Documents
Sections or
propositional attitudes
Clinical Statements [simple
and complex]
Clinical [SNOMED CT] & Health
System Terminology
Weights, measures and units
Definitions
The Integration of Data Standards
and the Stakeholder Community
Policy & Analysis
Patients
and
Clinicians
Suppliers
and IT
leaders
Societal Context;
The public
The Integration of Data Standards
and the Stakeholder Community
Secondary Uses Policy & Analysis
Temporal
Abstraction
Standard Method
Patients
and
Clinicians
Logical Record
Model Standard
Suppliers
and IT
leaders
Health Record
Information Governance
&Communication
Standards
Practice Standards
Societal Context;
The public