Clinical information model patterns – the complexity of health record requirements

Silje Ljosland Bakke

a,b

, Heather Leslie

a,c

a

Co

-lead, Clinical Modelling Program, openEHR Foundation,

b

Information Architect, Nasjonal IKT HF, Norway

cb

CCIO, Ocean Health Systems, Australia

Abstract

Standardisation of clinical models during the last 20 years has

mostly been focused on a small set of concepts central to

reporting or communication between healthcare

organisations, like lab results, diagnoses and procedures.

While these concepts are themselves complex, there are a

huge number of additional clinical models required to

represent the content required to cover the clinical scope of

comprehensive electronic health records. Standardisation of

clinical models for use within clinical systems have receive

d

little attention to date but are crucial to deliver clinical care

and underpin decision support. Examples of critical patterns

include: the complex, fractal nature of recording examination

findings; the scope and detail of therapeutic precautions;

managing negation/exclusion: and the varying requirements

for social history recording. This workshop will discuss and

explore the complexity and patterns that have been developed

and published within the openEHR community, with broader

applicability to other clinical modelling paradigms.

Keywords

:

Informatics, Common Data Elements,

Introduction

Clinical information modelling has historically been a fra

g-

mented activity. In recent years standardisation has starte

d to

occur but focused on a small number of core concepts that

are

primarily used to support communication between providers

and health sectors. The work required to enable this level

of

interoperability of clinical data has been huge. The effort

r

e-

quired to standardise the full scope of clinical recording r

e-

quirements for a complete electronic health record, report

ing,

querying, decision support etc had not been well explored to

any significant degree

–

each vendor usually working from

their own unique data models. Breaking down the resulting

silos of data created in isolation in each vendor

’

s applications

is our next interoperability challenge.

In 2008 the openEHR community commenced collaborative

development, peer review and governance of clinical info

r-

mation models intended to meet the clinical recording r

e-

quirements for comprehensive electronic health records

–

to

cover the complete scope of the clinical record. Clearly the

scope is huge and the amount of detail required is enormous

,

yet until now the complexity and size of work has been

largely

underestimated. Eight years later there is a library of

impl

e-

mentable openEHR clinical models known as archetypes,

growing in numbers and complexity. The openEHR specific

a-

tions mandated a dual-level modelling approach which pr

o-

vides for the ability to create a standardised archetyp

e and

constrain it for user/scenario requirements in a secondary

art

e-

fact known as a template

–

in this way both standardisation of

data patterns as well as the flexibility required for cli

nical va

r-

iation are enabled.

The resulting openEHR archetypes reflect a large amount

of

work by grassroots clinicians and health informaticians.

There

has already been some direct collaboration with other st

and-

ards development organisations and it is the desire and

intent

of the openEHR community that these models are not just

implemented by openEHR vendors but can be shared and

cross-pollinate other implementation paradigms.

In that spirit, this workshop will identify, explore and discuss

some of the learnings about the patterns and complexity iden-

tified in building openEHR archetypes for some key areas

of

clinical information modelling.

Workshop

Workshop speakers



Silje Ljosland Bakke RN BSN

Silje is an informatician and a registered nurse, with

a

clinical background in surgical nursing as well as

clinical research from the University Hospital of

Northern Norway. She has worked in health IT in th

e

Norwegian hospital sector since 2009, since 2015 as

an information architect in the Nasjonal IKT health

trust for strategic IT cooperation within the

Norwegian public hospital system. She has been a

leading figure in Norway

’

s openEHR modelling,

governance, and training effort since 2013, and joined

Heather Leslie as Clinical Program Co-Lead at the

openEHR Foundation in 2015.



Heather Leslie MB BS, Dip.Obs (RACOG),

FRACGP, FACHI

Dr Heather Leslie is Chief Clinical Informatician at

Ocean Health Systems and Co-lead for the openEHR

Foundation's Clinical Program. Since 2004 she has

guided the evolution of

‘

the openEHR approach' to

creation of clinical content for electronic health

records using archetypes, including driving

development of the online Clinical Knowledge

Manager (CKM) tool. She has also provided clinical

modelling/clinical knowledge governance consulting

services and training to many international eHealth

programs & organisations - including Norway

’

s

Nasjonal IKT, NHS England, Australian Digital

Health Agency, Canada's Alberta Health Services and

the Ministry of Health in Brazil.



Both speakers will contribute their knowledge and

experience from overseeing the development, quality

assurance and governance of clinical archetypes

through the openEHR online community of clinicians

and other domain experts from over 80 countries.

Workshop topics

The workshop will cover a series of topics the authors hav

e

identified as particularly challenging during their own exper

i-

ence with modelling clinical information, including the fo

l-

lowing six topics:

Examination findings

Clinical examinations is a very large and complex area,

covering anything from the visual inspection of the skin f

or

cyanosis, via palpation or percussion of the abdomen, to

the

gastroscopic inspection of a duodenal gastric ulcer. In man

y

cases a whole stack of examinations are done consecutive

ly,

by starting on the level of the whole body and "zooming"

down into smaller and smaller areas in a fractal way,

while in

other cases the same detailed examinations are done direct

ly

and without any higher level examinations. This puts a h

igh

strain on the flexibility of information models to be use

d for

recording clinical examination findings, and the workshop wi

ll

present and discuss a proposed pattern for modelling such

examination findings.

Therapeutic precautions

Certain information types are critical for clinicians to

be aware

of while planning a patient's care. Some examples are adverse

reactions (to drugs, food, or other substances used in car

e or

present in the environment), contraindications (to spec

ific

procedures or interventions), or precautions (about specifi

c

conditions that may impact care choices in a multitude of

ways). These concepts have some common traits, but als

o

differ in significant ways which impact their respective

information models. The workshop will discuss the different

concepts and their commonalities and differences.

Social history

Social history is a mixed bag of different concepts, ranging

from information about social dependency and dependants,

marital status and housing, through religion and education, to

occupation, income and drivers licenses. These different

concepts will be needed in different combinations and to

different levels of detail in each clinical setting, and

wil

l

therefore have to be modeled as separate consepts to be

combined as required under a common heading. The

workshop will discuss the different concepts, how to ident

ify,

separate and model useful concepts, and how to combine

them.

Addiction

Addiction is an entire medical speciality in itself, rela

ting to

addictions ranging from nicotine and alcohol through

gambling to narcotics. Many tangential concepts such as

social history are important in addiction medicine, while

the

core concepts will in most cases be related to the his

tory of

use and consumption of addictive substances. Modelling this

area comes with a series of complications, including wh

ether

or how to separate substances from methods of administra

tion,

and whether to make generic models for several substance

s, or

specialise them for each substance or group of substance

s. The

workshop will explore this area and discuss possible

modelling patterns.

Maximum data sets vs. name/value pairs

One tried and tested way of doing information modelling is

making name/value pairs, each consisting of a single dat

a e

l-

ement with a corresponding name or definition. While this

works well for some data, it comes in short when applied t

o

more complex data where it's important to maintain the re

l

a-

tionship between several data elements in a single instanc

e. A

second way of modelling which solves the problem with

name/value pairs is using minimum data sets to specify the

exact required data of a specific use case. This however ha

s

the drawback that the same concept invariably will be m

od-

eled in different ways and with varying levels of detail a

cross

several use cases. A third way which improves on this

issue is

splitting the model into discrete, reusable concepts, wit

h the

intention that the models in time should grow to be maxi

mum

datasets for their concepts. This means that the exact

same

model can be used across use cases even with different l

evels

of detail, but defining the concepts and making a growable

pattern places a heavier load on initial modelling efforts.

The

workshop will discuss the relative merits and drawbacks of

each modelling pattern, and how to find a sweet spot.

Exclusion/negation of clinical concepts

When planning care, many concepts need to be excluded due

to recorded findings, such as problems/diagnoses, adverse

reactions, medications or family history. Exclusions/ne

gations

is a semantically difficult area, riddled with questions about

such things as double negation, differentiation between the

excluded concepts, differentiation between the "flavours" of

exclusion, the relevance of exclusions over time, and generi

c

vs. specific exclusions. The workshop will discuss the

different problem areas and proposed solutions.

Target audience

This session is directed at students, clinicians, clinic

al

informaticians and system implementers who are intereste

d in

collaborating across standards development organisations on

standardising clinical content, in the clinical modelli

ng

problems and patterns identified by the openEHR community,

and how these can be reflected in actual clinical models

.

Educational goals

Participants will gain a better understanding of the mode

lling

approach and patterns developed by the openEHR community,

and how this has been carried through to relate to real-wo

rld

clinical modelling challenges and experience, with learning

applicable to other related projects beyond those interes

ted in

a pure-openEHR approach.

Acknowledgements

The openEHR international community, including associat

ed

national and regional communities, of clinicians, health

in-

formaticians, implementers and others have made invaluabl

e

contributions to the identification and refinement of t

he co

n-

cepts and modelling patterns referred in this workshop.

Address for correspondence

Silje Ljosland Bakke

–

silje.ljosland.bakke@nasjonalikt.no