#Uncomplexication of clinical infostructure - a clinical modelling odyssey

#UNCOMPLEXICATION OF CLINICAL INFOSTRUCTURE

AKA ‘a clinical modelling odyssey’

Dr Heather Leslie

Healthcare's Big Problem With Little Data Gartner’s hype cycle: “Big Data” heading toward the

“Peak of Inflated Expectations”

“In the meantime, however, ”little data” in healthcare continues to give us all peptic ulcers”

“Clinical data at the unit level is chaotic and dysfunctional because it’s not easily transferable or usable outside of the system that first created it. In a world of competing financial interests and an increasingly mobile population – every patient encounter represents an opportunity for technology vendors to lock-in providers.”

“Historically, the crutch that many software vendors have relied on is the format of the data itself.”

http://www.forbes.com/sites/danmunro/2013/04/28/big-problem-with-little-data/ - April 28, 2013

http://www.forbes.com/sites/danmunro/2013/04/28/big-problem-with-little-data/

http://www.forbes.com/sites/danmunro/2013/04/28/big-problem-with-little-data/

The odyssey? 2004 – the ‘sneak preview’

The odyssey? 2004 – the ‘sneak preview’ 2007 – initial modelling for NHS

210 archetypes/49 templates 2 people/3 weeks – simple, pragmatic,

no review, no metadata Antenatal, Emergency Demonstrated capacity for:

Rapid development Archetype re-use

Need for CLUSTER archetypes identified

The odyssey? 2004 – the ‘sneak preview’ 2007 – initial modelling for NHS

The odyssey? 2004 – the ‘sneak preview’ 2007 – initial modelling for NHS 2007 – ongoing NHS internal

modelling 691 archetypes; 60 templates Observations:

Lack of openEHR skills Technical modellers; lack of domain

experts Lack of common methodology;

coordination Not a specific NHS issue, but reflects the

human experience >> Identified need for Collaborative/Governance tool

Initial Team Modelling - analysis Naming inconsistency Wrong class Modelling design

Lack of training Technical modeler Inconsistent patterns

Content scope, context and intent unclear Granularity:

Make into a template, OR Need to divide into multiple smaller archetypes

Minimal content change resulting in specialisation, but effectively just renaming.

Multiple versions of same concept Need to model generic concept comprehensively first, then

specialise Need to re-use existing archetypes Zero content change but created as new version

The odyssey? 2004 – the ‘sneak preview’ 2007 – initial modelling for NHS 2007 – ongoing NHS internal

modelling 2008 – CKM development

commences… Late 2008: Initial openEHR CKM

deployment – 250 archetypes, largely from the initial

NHS modelling work

CKM distribution

openEHRinternational CKM… plus

openEHR modelling activity openEHR Foundation ?Argentina/Uruguay Australia

NEHTA – national program Northern Territory Ocean

Brasil National program/Uni. Brasilia Unimed Minas Gerais Federal University of São

Paulo

New Zealand University of Auckland

Norway Uni Tromso DIPS/HelseBergen

Portugal University of Porto Critical

Russia City of Moscow

Slovenia Marand Ministry of Health

Sweden Cambio

UK GP2GP Leeds Care Record Service SCIMP RCP Headings project

WHO HAVE I MISSED?

Modelling momentum…

Fragmented, piece-meal, spurts or activity

Zero-resources ?Largely driven by Ocean

projects/apps/collabs Passive openEHR community…

Happily, this is changing… Industry Group -> $$ for archetype

devt/pub More CKM instances with collaborative

mindset Norway, Slovenia, ?Brasil

Platform -> applications -> demand for archetypes

Lessons: Collaboration

Major strength: Underpins the openEHR methodology



Collaboration >> interoperability Multiple sub-domains/projects in a single instance Multi-instance cooperation International instance




Tension in international CKM support localisation vs common requirements opportunities for all to ‘play’




Tension in international CKM support localisation vs common requirements opportunities for all to ‘play’

‘Top down’ vs ‘bottom up’ Volunteering archetypes Online vs F2F Meetings

Lessons: Archetype creation Value of ENTRY classes

COMPLEX+++

Actions

Published evidence

base

Personal knowledge

baseEvaluation2

Observations

Subject

Instructions

Investigator’s agents

4

3

1Domain Expert

Lessons: Archetype creation Value of ENTRY classes Clinical informatician or technical modeller

or…?

v


or…? Pragmatic ‘Maximal dataset/Universal use

case’


or…? Pragmatic ‘Maximal dataset/Universal use

case’ Pattern evolution

Academic/intellectual/practical starting point Iterative: refined after template design or

implementation Examples

WYSIWYG – many OBS, CLUSTER, EVAL Frameworks – Procedure ACTIONs, complex Lab/imaging

OBS Physical Examination – fractal CLUSTERs within

OBS.exam Minimising Specialisation – useful for localisation

Lessons: Template creation Embodiment of the 2 level modelling ‘magic’

Lessons: Template creation Embodiment of the 2 level modelling ‘magic’ ‘Light’ Training Decentralised development Meet local requirements

Lessons: Template creation Embodiment of the 2 level modelling ‘magic’ ‘Light’ Training Decentralised development Meet local requirements Enables clinician diversity

Lessons: Template creation Embodiment of the 2 level modelling ‘magic’ ‘Light’ Training Decentralised development Meet local requirements Enables clinician diversity Power of archetype re-use

Re-use of existing

16 50% re-used, no changes

59% re-use

Modify existing – minor

2 9% re-used with some enhancements from newly identified requirements

Modify existing – major

1

New development

13 41% new

Lessons: Template creation Embodiment of the 2 level modelling ‘magic’ ‘Light’ Training Decentralised development Meet local requirements Enables clinician diversity Power of archetype re-use Potential for multiple outputs

Clinician friendly UX -> engagement Technical artefact generation Documentation generation

Lessons: Artefact governance Govern archetypes tightly Templates can be governed, if required; otherwise

kickstart others

COMPLEX++++++++++


kickstart others Artefact identification

‘Wild’ vs governed Artefact versions/revisions/builds vs publication status




‘Folders’ Governed: Subdomains & Projects Ungoverned: Incubators - public or private





Management of groups of artefacts Templates – archetypes + ref sets; all with IDs, versions etc Release Sets Remote Subdomain – referenced artefacts from another instance





Management of groups of artefacts Templates – archetypes + ref sets; all with IDs, versions etc Release Sets Remote Subdomain – referenced artefacts from another instance

Single instance vs Multiple instances

Lessons: CKM personpower

Single, standalone instance [vs shared instance] 2-3 Clinical Knowledge Administrators (CKA)

Oversight & responsibility for all of the clinical knowledge artefacts

Core team of skilled ‘archetype wranglers’ (4-8) Cohesive pool of archetypes Common mechanism for engagement with terminology Multidisciplinary team – informaticians, domain experts,

engineers, terminologists

Editorial leadership Content, Terminology, Translation

Distributed Template Authors ‘Light’ training, local needs

Broad online community of reviewers

Into the future…

Focused, coordinated and resourced activities Artefact development Publication Governance

SDO collaboration CIMI FHIR CDISC? IHTSDO?

Secondary Use Research/Registries/Epidemiology

HOPEFULHOPEFUL

not so sure

HOPEFUL

Into the future…

Inter-CKM collaborative community Modelling Documentation Training

Variety – F2F, online etc Accreditation

HOPEFUL

dreading

HOPEFUL

Technology

#Uncomplexication of clinical infostructure - a clinical modelling odyssey