Patient summaries in Paediatric Emergencies: Policy, Standards, Prospects: Joint MOCHA - Trillium Workshop at MIE2018

1
Patient summaries in
Paediatric Emergencies:
Policy, Standards,
Prospects
Catherine CHRONAKIa,, Michael RIGBYb, Frederic
EHRLERc, Rianne OOSTENBRINKd, Simon de LUISIGNANe,
Dipak KALRAf, Tarik DERROUGHg
a HL7 Foundation, Belgium, b Imperial College London, UK, c
University Hospitals of Geneva, Switzerland, d Erasmus Medical
Center, The Netherlands, e University of Surrey, UK, fEuropean
Institute for Innovation through Health Data, Belgium
gEuropean Center for Disease Prevention and Control, Sweden
Corresponding Author: Catherine Chronaki euoffice@HL7.org

Patient Summaries in Paediatric Emergencies: Policies, Standards, and Prospects 2
Abstract. Patient summaries defined as the minimal set of health information that needs to be conveyed for
patient safety in the context of emergency or unplanned care were initially introduced in a European context in
the cross-border setting across member states of the European Union.
Quite complex and high impact emergency situations involve young children and their parents. Then, shifting
to a patient-centric perspective, patient summaries make sense in the hands of active and empowered parents
and carers.
This workshop builds on the work of the Trillium-II project that aims to scale-up use of patient summaries and
the work of the MOCHA project which is analyzing health policies for children in 30 European states.
The expected outcome of the workshop is to identify challenges and propose recommendations for further
coordinated action where digital health policies interface with standards, with clear objectives, actions and
intended benefits.

Introduction
The Trillium-II project (www.trilliumbridge.eu) aims to scale up adoption of International Patient Summary (IPS)
standards extending the patient summary concept beyond the cross-border setting addressed by the eHealth Digital
Services infrastructure [1], which considers minors out of the initial scope. Trillium-II analyses use the IPS components
namely problem, medications, allergies, etc., in digital health communities of practice, facilitating synergies and sharing
of experience and knowledge. Situations addressed are refined and move beyond the typical ambulatory case of
unplanned visits.
The MOCHA project (www.childhealthservicemodels.eu/) addresses the full spectrum of primary care policies for
children in the 30 European countries, including looking at the practice of Electronic Health Records and public health
system use for children including also digital health. MOCHA has reviewed policies for urgent child care in schools
across Europe and compiled use cases simple and complex, from a policy view [2]. Interviews with children and parents
provide insights into their expectations, and the MOCHA project is linking with the European Center for Disease Control,
regarding that agency’s vision on Immunization Information Systems. MOCHA has ascertained each country’s policies in
linking primary care and school health service records and assessed the policy in each country with regard to accessing
medical records when a child needs urgent care during the school day. The rights of older children to autonomy in
confidentiality and in record access, also under new Data Protection Convention and patient summaries provide
illustrative examples.
University Hospitals of Geneva are piloting a mobile app to reduce waiting time for pediatric emergencies, prepared
before and after the emergency visit. Starting from this example, and examining key use cases identified by MOCHA
from a social, technological, and financial perspective linked to the patient summary, will help understand the challenges
and the benefits of using patient summaries in daily clinical practice [2-4].

Speakers
Professor Michael Rigby will address the “disparity in national policies on availability of key emergency clinical
information in school time” drawing results directly from a MOCHA project survey. Michael is visiting professor and
senior research fellow at the Section of Paediatrics in Imperial College London, and Emeritus Professor of Health
Information Strategy, School of Public Policy and Professional Practice, Keele University, UK. He is the deputy
principal investigator for the Models of Child Health Appraised (MOCHA) Horizon 2020 project. He also member of
the IMIA Working Group on Technology Assessment and Quality Development.
Catherine Chronaki, institutional member officer on the Board of EFMI, secretary general at the HL7 Foundation,
and scientific lead of Trillium-II, will present patient summaries as developed and extended in the Trillium-II project,
and introduce the speakers. She will focus on how standards can help build trust in the data and shape expectations on
supported functionality.
Frédéric Ehrler will present a mobile app, developed by his team at the University Hospital of Geneva, assisting
young patients and their families in the management of pediatric emergencies. His presentation aims to inspire the
audience to imagine how the patient summaries can support the patient journey and initiate the discussion on how
different policies in Europe can be bridged. PhD in Computer science, Frederic is specialist in improving healthcare
system efficiency and user experience through innovative IT solutions. He aims to foster the integration of evidence
based methodology in the implementation of IT solutions in hospitals. Frederic has a strong experience in user centered
design and evaluation of patient centric interventions. He is using a wide range of technology going from gamification
to IoT to implement innovative solutions improving the efficiency of the whole healthcare ecosystem.

Speakers
Rianne Oostenbrink will present views on young patients with complex needs i.e., what info should be essential in the
patient summary, and what would be the role of parents in managing, maintaining and using them. Moreover, Rianne will
discuss how to provide parents essential information they can share as a summary in the perspective of continuing care from
discharge from the ED to potential revisit to subsequent caregivers, and how to support parents in reevaluating their child and
to decide upon new health contact. Rianne Oostenbrink is pediatrician at the dept. of general pediatrics of the Erasmus MC –
Sophia in Rotterdam, The Netherlands and chair of the REPEM European research network pediatric emergency medicine.
Professor Simon de Lusignan is a general practitioner, professor of primary care and clinical informatics, head of the
department of clinical and experimental medicine at university of Surrey, director of the Royal College of General Practitioners
research and surveillance centre, member of the BCS Health and Care executive and the UK national representative to EFMI,
and the Publications Officer on the EFMI Board. Simon will address the use of big data, especially routinely collected data to
support better clinical care focusing on looking at the data flows between primary and secondary care using exemplar
conditions such as asthma and diarrhea. These conditions are used to investigate the interface of primary and secondary care to
compare data flows in primary care systems. In addressing the role of patient summaries, Simon will explain how improved
data flows may be facilitated by patient summaries and result in better quality data for research and policy development.
Tarik Derrough, senior expert in vaccine-preventable diseases, at the European Centre for Disease Prevention and Control
(ECDC), leads a project about electronic immunisation registries and will share EU experiences in collecting individual level
data on immunisation to better support immunisation services and programme monitoring. The sharing of standardised
immunisation data across borders and linkage with other health outcome databases are among areas of interest to be addressed.

Expected outcome
The workshop will be organized as a sequence of brief 5 minute position statements followed by
interaction with the audience using sli.do. Then, there will be a second round of discussion and 30
minutes of Q&A and interaction with audience. In the closing, key results of the workshop will be
summarized, and next steps will be identified. Questions will aim at capturing insights from the
audience and prioritizing a set of topics to be presented in a workshop report which will guide follow-
up activities on child health to be organized in the second part of 2018.

Dany, 14
“diagnosis of asthma made by his primary care practitioner when he was 5
years old. He has many acute attacks which are triggered by cold weather,
pollen and house dust mite as well as viral respiratory tract infections”
The PHC team check his
inhaler technique and
makes sure that his
agreed written asthma
plan is up to date
Daily situation
management
Life at School
School do not always
allow for Dany's asthma.
Dany had two severe
episodes when the
ambulance had to be
called at school
paediatric respiratory
specialist suggested
some new medications
and has also gained the
family consent to enter
into a clinical trial
Receiving the
best care
Continuity of
care
In the last two years
Dany has attended a
variety of Emergency
departments
Dany wonders how
his treatment is going
to be managed when
he becomes an adult.
Growing up
The importance of the patient summary for Dany

Emergency Records and Children
in School
Michael Rigby
Visiting Professor, Imperial College London
Deputy PI, MOCHA Project

Models of Child Health Appraised (MOCHA)
• Horizon 2020 funded project
• Tasked with appraising child health models in 28
EU and 2 EEA countries
• 9 Scientific Work Packages
• Country Agent to supply data in each country

Where is the School Child Tetanus Record?
Country School
cannot
supply
school has a health
record from which it
can share the
information
school holds a health
proforma completed by
the parents which it can
share
school provides the
primary care provider’s
identity, to enable
direct enquiries
urgent treatment centres
have access to primary care
medical records
Austria ✓
Bulgaria ✓
Croatia ✓
Cyprus ✓ ✓
Czech Republic ✓
Estonia ✓
Finland ✓
Germany ✓
Greece ✓
Iceland ✓
Italy ✓
Latvia ✓
Lithuania ✓
Netherlands ✓
Norway ✓
Poland ✓ ✓
Portugal ✓ ✓ ✓ ✓
Spain ✓
Sweden ✓
UK ✓
Total numbers 8 6 3 4 4

How is Tetanus Status found by
Emergency TC?
Out of 20 countries
6 - Health record held in school
3 – School holds parental history form
4 – school tells TC of the Primary Care Dr
4 – TC has direct access to data
6 – no ready answer

Conclusion
• Are we putting our children at unnecessary risk?
• Need for emergency data set and data standards

Primary Health Care varies
Simon de Lusignan
Professor of Primary Care & Clinical Informatics University
of Surrey
Work Package Lead, MOCHA Project
Filipa Ferreira, Uy Hoang and Harshana Liyanage

There is a variation between & within
countries in paediatric primary care
Out of 30 countries
11 – GP based systems
5 - Paediatrician based systems
14 - Mixed/combined systems

MOCHA International
Research Readiness
Instrument
Compendium of downloaded
ananymised case databases

Country
Agents
MOCHA
International
Research Readiness
Instrument
Online Repository
160 response from 26 EU countries

MOCHA on EMIF catalogue
Type of health system No of countries
Paediatrician based 5
GP based 11
Combined system 14
http://www.emif-catalogue.eu

Two MOCHA indicators pertinent to
this case
Example graphs of variation in ratio of
inhalers and antibiotic use
Quality indicator Description
S1. Asthma care for children % of asthmatic children between 5-18 years prescribed reliever versus preventer
inhalers within the past year
S2. Antibiotic stewardship total number of Amoxil prescriptions per year for children under 19 years/ total number
of prescriptions for cephalosporins per year for children under 19 years

Antibiotic prescribing – International variation
0
5000
10000
15000
20000
25000
2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016
Numberofprescriptionsforchildrenaged
5-14years
Year
Italy
Amoxycyclin prescribed Cephalosporins prescribed
0
5000
10000
15000
20000
25000
30000
35000
2007 2008 2009 2010 2011 2012 2013 2014 2015 2016
Numberofprescriptionsforchildren
aged5-18years
Year
England
Amoxycylin prescribed Cephalosporins prescribed

Asthma prescribing
– year on year & international variation
1.05
1.1
1.15
1.2
1.25
1.3
1.35
1.4
1.45
2007 2008 2009 2010 2011 2012 2013 2014 2015 2016
Ratioofasthmapreventerstorelievers
Year
England Italy

Conclusion
• There is variation in paediatric care in Europe
• The variation is:
– Between providers
– Over time
– Between countries
• This variation may affect the care given in this case

Reinforcing the Bridges and Scaling up
EU/USCooperation on Patient Summary
Trillium II
This project has received funding from the
European Union’s Horizon 2020 research
and innovation programme under grant
agreement No 727745

eStandards as infrastructure for innovation
• Massive health data accumulated in silo EHR systems for documentation
– Need to move from passive documentation to active use of information and knowledge creation: activation!
– Need to move from cross border exchange to engagement of communities and individuals: empowerment!
• Standards and profiles address a predefined exchange of information.
– Need sharing and use of content & structure, across national, regional, local jurisdictions: trust & flow!
Patient Summaries in Paediatric Emergencies: Policies, Standards, and
Prospects
25

Making Digital Work for health with Trust and Flow
• Co-create
– to make it real using
standards
• Governance
– to make it scale for
large-scale
deployment
• Alignment
– to make it flourish in
a sustainable way

eStandards project vision is that of a global eHealth ecosystem
Where:
▪ people have navigation tools for safe
and informed health care
▪ interoperability assets fuel creativity,
entrepreneurship, and innovation
eStandards:
▪ nurture digital health innovation
▪ strengthen Europe’s voice & impact
▪ enable co-creation and trusted
provider-user relationships
www.estandards-project.eu
Prospects
Source: eStandards D3.1
27

eStandards Project Highlights
• Problem: Standards roadmap to support large-scale
eHealth deployment
• Ambition: standards organizations as the authority
and shepherd of high quality standards to advance
and sustain cost effective integrated health services.
Key outcomes:
– eStandards lifecycle model
– Cookbook of best practices for
interoperability practitioners
– Co-creation, Governance, Alignment
(CGA) Framework
– Applications on Patient summaries
Prospects
28

Patient Summaries in Paediatric Emergencies: Policies, Standards, and Prospects
Several viewpoints inform the creation of roadmap elements
Identification of Needs taking
perspectives into account
Necessary Artefacts and
components part of the EIF
Actions to be taken
Trust & Flow
➢ Knowledge innovation
➢ Information exchange
➢ Data capture
➢ Generic Requirements
➢ State of the Art
➢ Development Needs
Phases in the
Health Informatics
Standards Life Cycle
Base Standards
Use Case based
Standards Sets
Assurance and
Testing
Live
Deployment
Feedback and
Maintenance
Tooling and
Education
Forums and
Monitoring
eStandards
eHealth
DSI
29

Patient summary standards
Think Patient summary as
vaccinations
medications
encounters
Identification
allergies
Implantable
devices
Health team
Security
preferences
Security
preferences
problems
Patient Summaries in Paediatric Emergencies: Policies, Standards, and Prospects

Patient summaries help build trust and improve quality of
services in community services
• Interacting with the patient and the family
• Quality assurance
• Health goals
• Early warnings
• Transitions of Care: Smooth discharge, transitions, and hand-offs
• Emergency or Urgent episodes: Safe care
• Risk Assessment

© 2016 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office.
What is an IPS ?
32
Possible Future extensions and useIntended Use
As a libraryAs a document
The IPS is a document !
Immunization
Allergies and
Intolerances
Plan of care

The IPS «world»
prEN 17269

THE HL7 FHIR IPS

The FHIR IPS IG (STU)
35
http://hl7.org/fhir/uv/ips/profiles.html
◼ Under STU Ballot (May 2018)

The IPS Structure
IPS Attribute
Collection
(e.g. Patient
Attributes)
IPS Sections
(e.g. Allergies
and
Intolerances)
Non-IPS
Sections

The IPS Sections
Medication
Summary
Allergies and
Intolerances
Problem List
Immunizations
History of
Procedures
Medical Devices
Diagnostic Results
Past history of illnesses
Pregnancy (status and
history summary)
Social History
Functional Status
(Autonomy / Invalidity)
Plan of care
Advance Directives
Vital Signs

The IPS Composition

The IPS Composition
39
GET http://app.srdc.com.tr/fhir/stu3/Composition/demo-ips-dany-boy-1

The IPS “document”
40
The first is a Composition
It has an identifier
The actual resource
Resources that have to be included (STU3)
• Composition.subject
• Composition.encounter
• Composition.author
• Composition.attester.party
• Composition.custodian
• Composition.event.detail
• Composition.section.entry
• All referred resources for the IPS Profile

41
GET http://app.srdc.com.tr/fhir/stu3/Bundle/demo-ipsbdl-dany-boy-1

42
POST http://app.srdc.com.tr/fhir/stu3/Composition/demo-ips-dany-boy-1/$document
New Bundle
POST http://app.srdc.com.tr/fhir/stu3/Composition/demo-ips-dany-boy-1/$document?persist=true

The Dany Boy’s story
◼ Dany is a 14 year old boy with a diagnosis of asthma made
by his primary care practitioner when he was 5 years old. He
has many acute attacks which are triggered by cold weather
, pollen and house dust mite as well as viral respiratory tract
infections.
◼ <….>
43

The Dany Boy’s story
44
Clinical scenario for MIE
Composition
Section
Dany is a 14 year old boy. composition Patient
with a diagnosis of asthma made
by his primary care practitioner
when he was 5 years old.
problems list
Condition1 Practitioner
He has many acute attacks problems list Condition1 (evidence) Observation1-1
problems list
Condition1 (condition-dueTo) one code/text per cause
Allergies list AllergyIntolerance
He is reviewed regularly by the
PHC team including the nurse
who checks his inhaler technique
and makes sure that his agreed
written asthma plan is up to date
.
TDB
…. which are triggered by cold
weather, pollen and house dust
mite, as well as viral respiratory

Essential data in pediatric emergency Care
Contents and process
Rianne Oostenbrink
Erasmus MC – Sophia Children’s Hospital

ED perspective
Diagnosis/Severity
Triggers
Current tx/interactions

ED perspective
Diagnosis/Severity
Triggers
Current therapy/interactions

ED perspective
Diagnosis/Severity
Triggers
Current tx/interactionsPatterns (prevention)
instability

ED perspective
Diagnosis/Severity
Triggers
Instability
Knowledge
Care/confidence

ED perspective
Diagnosis/Severity
Triggers
Instability
Knowledge
Care/confidence
Databundle
Contents
Proces/delivery

A mobile app to
guide the patients A support tool for
the caregivers
An information screen
to improve the wait
An administartive app
supporting the processes

What information in the summary ?

E-immunisation Registries / Immunisation Information
Systems
MIE 2018 – 25 April 2018
Tarik Derrough
Senior Expert Vaccine Preventable Diseases
Vaccine Preventable Disease Programme
European Centre for Disease Prevention and Control

IIS…
are confidential, population-based,
computerized systems that record, store, and
provide access to all individual immunisation
information. They aim to be comprehensive
and community-wide, covering individuals in a
specific geographic area across multiple
healthcare providers
Confidential
Population-based
Identify pockets of needs
Exchange data with multiple providers
Assist providers in immunisation
Help improve vaccination rates
and reduce vaccine-preventable
diseases
Create
comprehensive
records
Support
Clinical
decision
Generate
reminders to
ensure on-time
vaccinations
Assist with
logistics of the
programme
(supply,
inventory…)
Create
consolidated
reports
Assist
programme
monitoring

http://ecdc.europa.eu/sites/portal/files/documents/immunisation-systems.pdf

Status of IIS implementation in the EU/EEA
countries – November 2016
* Germany and Sweden have national systems that do not have the ability to consolidate immunisation histories for use at point of
clinical care. Their systems only provide aggregated data on vaccinations at population level.
Source: Derrough T, Olsson K, Gianfredi V, Simondon F, Heijbel H, Danielsson N, Kramarz P, Pastore-Celentano L. Immunisation Information Systems – useful
tools for monitoring vaccination programmes in EU/EEA countries, 2016. Euro Surveill. 2017;22(17)

Access rights to the IIS – within a country

Sharing and access of immunisation information across borders
There are no international guidance for vaccination
card/certificates on format or necessary information
in order to consider it as valid and genuine
Need for agreement on a set of information and
propose this to become a standard
Benefits:
▪ Facilitate transfer of immunisation data across the
EU and across E-immunisation registers
▪ Fulfil international requirements (e.g. YF
vaccination)

Characteristics of an ideal system (some of)
▪ Inclusion of all persons at birth, or as early as possible and throughout a lifetime
▪ Unique Identifier shared across the health system
▪ Info on geographical area of residence
▪ Information about the vaccines given, dates, and provider
▪ Allowing aggregation of data by geographical level
▪ Allowing timely individualised follow-up
▪ Integrating immunization-related capabilities within EHRs
▪ Data security and protection of patient confidentiality
▪ Allowing personalised access to all of those that need to know
▪ Allow citizen access
▪ High quality data

Context – IIS in the EU – Supportive legislation
6 Jun. 2011: Council conclusions on childhood immunisation:
successes and challenges of European childhood immunisation
and the way forward
Inviting Member States to “….consider introducing or further
developing immunisation information systems, including improved
registration, where applicable, and pharmacovigilance systems”
8 Jul. 2011: Council conclusions on childhood immunisation: successes and challenges of European childhood immunisation and the way forward
http://eur-lex.europa.eu/legal-content/EN/TXT/?uri=uriserv:OJ.C_.2011.202.01.0004.01.ENG
1 Dec. 2014: Council conclusions on vaccinations as an effective tool in public health http://www.consilium.europa.eu/uedocs/cms_data/docs/pressdata/en/lsa/145973.pdf
1 Dec. 2014: Council conclusions on vaccinations as an
effective tool in public health
Inviting the European Centre for Disease Prevention and Control
(ECDC) to “…place technological and IT tools at the disposal of
Member States and improve links to existing European portals and
tools to support Member States in their efforts to strengthen
vaccination as an effective tool in public health"

Context – IIS global - WHO EUROPEAN VAP
EVAP Objective 4: Strong immunization
systems are an integral part of well-
functioning health system
Priority 2: Strengthen monitoring and
surveillance systems.
“Develop and promote the use of new
information technologies for collection,
transmission and analysis of immunization
data within immunization information
systems that are well integrated with
communicable disease and health
information systems”
http://www.euro.who.int/__data/assets/pdf_file/0007/255679/WHO_EVAP_UK_v30_WEBx.pdf?ua=1

Upcoming initiatives
EU Council recommendation on vaccination (end April 2018)
Joint Action on Vaccination (Lead: France, INSERM)
▪ Specific work package on IIS
▪ Lead: Denmark and Croatia
▪ ECDC as partner
Other related initiatives on E-health

IIS - ECDC in a supporting role
▪ Recognised as an integral part of the VPD work programme at ECDC
▪ Support Member States as an integral part of a well-functioning
immunisation programme:
▪ Survey on level of implementation 2016
▪ Eurosurveilance special issue 2017
▪ Technical guidance (publication June 2018): Aim to provide guiding principles and good
practices for implementing and developing an IIS
▪ Providing support to Member States through in-country visits/workshops
and technical documentation (e.g. Spain, Cyprus, Austria)
▪ Advocating on the advantages of IIS with key stakeholders:
- DG SANTE and DG Connect: Linking E-health and M-health to immunisation
- EU/International Standard bodies
- EU and International “IIS managers”

IIS - ECDC in a supporting role
▪ Creating a network of expertise through the collaboration with international partners
(WHO/CDC/AIRA + EU Member States) and linking with international projects (e.g. Scientific
Societies engaged in E-Health, Joint Action on vaccination, MOCHA/H2020: Models Of Child
Health Appraised)
- Best-practice sharing
- Twinning exchanges
- Striving for shared solutions to strengthen interoperability and standardisation

General Purposes of an IIS
KEY STAKEHOLDERS
• Citizens have immediate access to their
immunisation history and information on diseases
for which they are vaccinated against
• Health care workers have access to their patient
vaccination history to ensure high standard of
care and tailored immunisation
• Public health authorities have access to a large
set of data needed to be able to identify and
respond quickly to concerns (e.g. vaccine safety
signals) in order to maintain the confidence of an
increasingly vaccine hesitant public who are in
need of evidence-based data.

General Purposes of an IIS cont.
Provide information to make better
operational decisions
▪ To support the delivery of the immunisation programme
at the point of administration
▪ To enable immediate access to individual immunisation
history
▪ Provide information to make better informed strategic
decisions
▪ To maintain and provide access to consistent and quality
data on immunisation and on the population
▪ To support the benefit/risk monitoring of vaccines and
vaccination programmes

Linkage with other health outcome registers
in 16 EU/EEA countries with IIS
73
Are you able to link to the
following
No Yes, these systems
are integrated
Yes, linkage routinely
done
Yes, linkage for
specific purposes
Primary care patient record
system/databases
MT, DE, IE, RO, UK ES, DK, PT, SE, LV FI BE, IS, NL, NO
Hospital discharge diagnosis
register/database
MT, DE, IE, RO, UK LV ES, FI BE, DK, IS, NL, NO, PT,
SE
Notifiable communicable
diseases database
MT, DE, IE, RO, UK ES, FI, NL BE, DK, IS, LV, NO, PT,
SE
Pharmacovigilance (vaccine
safety) registries
MT, DE, IE, PT, RO,
UK
LV NL, ES BE, DK, IS, NO, SE, FI
HU – no answer

Example: Finnish IIS
Source: Baum U, Sundman J, Jääskeläinen S, Nohynek H, Puumalainen T, Jokinen J. Establishing and maintaining the National Vaccination Register in Finland. Euro Surveill.
2017;22(17):pii=30520
2000: THL project to
collect nationwide
information about
primary healthcare visits
(Avohilmo)
2009: first pilot to
collect real-time data of
primary healthcare visits
2010: The fields
describing vaccinations
were included in
Avohilmo (real-time data
entry)
2015: all operational
HCCs (153/153) had
joined Avohilmo

Functionalities
Individual vs Population level

Use of IIS in planning immunisation activities
78
Country
Automatic
reminder sent to
vaccine recipient
Automatic
reminder sent to
vaccine provider
Built-in decision
support
system/decision tree
IIS identify
individuals
incompletely
vaccinated
according to age
Can record reasons
for vaccine refusal
or hesitancy
Belgium (Flanders) x
Denmark x
Finland x
Germany
Hungary x
Iceland x x x
Ireland x x
Latvia x x x x
Malta x x x
Netherlands x x x
Norway x x
Portugal (mainland) x x x x x
Romania x x
Spain (Andalusia) x x x x
Sweden x
UK (England) x x x x

System design, development and
implementation

System designing
Identify the needs01
Identify the key functions to meet
the needs
02
03 Identify the minimum fields to support the
key functions

What are the needs?
What problem(s) are you trying to solve?
The problem might be:
▪ to maintain an overview of the individual vaccination status of all vaccinees
▪ Consolidating vaccines administered by different providers and in different settings
▪ Determining which vaccinations are due or overdue
▪ To monitor vaccination coverage
▪ to form a reliable basis for research into the effectiveness and safety of the vaccines in the programme.
….

Example from Spain
Diversity of subnational systems

What are the key functions of an IIS?
▪ What are the minimum functions an IIS should do? Or, what will the system do
to address the key needs?
▪ To address the problem of a consolidated record for each individual/patient
the system must e.g. :
▪ Record a person/patient’s personal information
▪ Record vaccine doses administered
▪ Record the name of the person that administered the vaccine
▪ Record the location of vaccine administration
▪ ---

Key considerations
▪ Interdisciplinary teams and organisations
▪ Mapping the context
▪ Supportive legislation
▪ Anticipating challenges and building them into the project plan
▪ High level comprehensive conceptual model of the system
▪ Costs and benefits of an IIS
▪ Defining modes of funding
▪ Different system development options
▪ Approaches for system roll-out
▪ Training users on the system

Implementation
Difference between centralized “top-down”
and decentralized “bottom-up” approaches

Example. BOTTOM-UP
CANImmunize
▪ Most decentralized federal country in the
world
▪ Every province has its own immunization
information system
• different immunization schedule
• different immunization information sheets
• different immunization providers
• different school immunization requirements
▪ CANImmunize viewed as one way to
address some of these challenges
▪ Patient-centered initiative

Example. TOP DOWN
Denmark
System financed by the National Government
and governed by the National Institute of Public
Health. The National board of eHealth is
responsible for the IT/technical development
and the integration with hospitals and GP IT
systems.
Aim: to facilitate calculation of vaccination
coverage and access to individual-level
immunisation records.
2000 - National childhood vaccination database
2008 - National vaccination register (including
vaccinations outside the national childhood
vaccination programme)
2012 - Research registry that captured electronic data
on reimbursement of vaccination to conduct studies
e.g. vaccine effectiveness
2013- Voluntary National system in the form of an
electronic patient record
2015- National system became compulsory
Source: Grove Krause T, Jakobsen S, Haarh M, Mølbak K. The Danish vaccination register . Euro Surveill. 2012;17(17):pii=20155. Available online: http://www.
eurosurveillance.org/ViewArticle.aspx?ArticleId=20155

Recording immunisation event data
Who? Where? When? How? What?

Who?
Population groups covered by the IIS
90
BE, DE, DK, ES, FI, IS, LV, NO, RO, SE
HU, NL, RO, SE, UK
IE
0 2 4 6 8 10 12
Life-course data
Children & adolescents
School-based
No. of countries
Populationgroup

What? Data Elements
Standardisation
IIS need to collect and present information in a seamless
format
▪ Data is shared with multiple providers – it needs to be
defined consistently
▪ EHR vendors have a harder time connecting to IIS that don’t follow
interoperability standards

Standardisation
Situation in the US and Norway
NORWAY:
▪ EHR vendors have to be pre-approved, with acceptance testing towards
SYSVAK.
▪ Currently there are 4 pre-approved vendors in Norway
▪ The IIS obtains data directly through electronic communication from the
HER: The system operates in accordance with Norwegian national
standards, with standards for communication from the EHR to SYSVAK
based on ebXML technology
FINLAND:
▪ Each software company designs the data entry into its patient information
system software following its own guidelines concerning the use of coding
and field validation rules.
▪ The process of extracting the data is fully automated and daily, comprising
new primary healthcare visit records and updates to existing primary
healthcare visit records each time.
USA:
▪ 632 unique vendors using an unknown number of
products
▪ 64 IIS using at least ~25 unique systems/ platforms

Recording of information on the vaccine administered
Selected from a list of vaccines that are:
▪ On a list of standard vaccine codes created for the IIS
▪ Uploaded (e.g. from electronic medical files) by a web service or similar
▪ Available through linkage to a product database of vaccines
▪ Identified electronically using bar code reader or 2D data matrices
▪ Entered manually in the IIS

Individuals identification in the IIS
94
• All countries use a unique identifier to record each immunised individual
BE, DK, ES, FI, IS, LV,
MT, NL, NO, SE, UK
DE, HU, IE, RO
PT
How the unique ID is generated
Birth or immigration
Specific ID for IIS
Healthcare services

Other considerations
Denominator
Data Quality
Data Storage

Is IIS information fed by any population registry?
96
BE, LV, MT, NL, NO, SE, UK
ES, HU, PT
DE, IE, RO
DK, IS
FI
0 1 2 3 4 5 6 7 8
Civil population registries
Healthcare population registries
No, data entered manually at patient encounter
Both civil and healthcare registries
Other
No. of countries
Registries

Outputs – real time vaccination coverage by birth cohorts
Source: https://www.ssi.dk/data - data up to 1 March 2018

Outputs – real time vaccination coverage by birth cohorts at communal level
(NUTS 3)
Source: https://www.ssi.dk/data - data up to 1 March 2018

NHS Digital interactive data dashboard
The 2016-17
annual COVER
report is
accompanied by a
new interactive
data dashboard,
with four years of
comparative local
data, which has
been developed by
NHS Digital in
collaboration with
PHE
Source: http://bit.ly/child_vaccstats_annual

Governance for the IIS
101
OTHER:
LV – National Health Service
SK – National Health Information System
MT – MoH and Primary Health Care
DE, DK, FI, HU, IS, NL, NO, SE
BE, ES, UK
PT, RO
IE
0 1 2 3 4 5 6 7 8 9
National Institute of Public Health
Regonal Health Authorities
National Institute of Public Health & Ministry of Health
Ministry of Health
No. of countries
Governancebody

Successes and challenges
Successes
▪ High-level of implementation in the EU
and Many country level initiatives
▪ High level commitment
• EU, ECDC, WHO and member states
• Favourable EU policy agenda
▪ Integration with European and national
digital strategies
▪ Integration with patient centered care
initiatives
▪ Addressing issues of vaccine hesitancy
Challenges
▪ Fragmentation at national level: Need to have
solutions that are appropriate for subnational/local
levels yet compatible with systems nationwide and
potentially internationally
▪ Allow flexible systems where vaccination may be
captured in different systems (e.g. hospital based
vaccination)
▪ Interoperability and standards
▪ Evaluation of effectiveness of IIS
▪ Sustainability: Understanding that this is a
looooooong and costly process

Conclusions
▪ Why are we interested in IIS/EIR?
- Increase performance of immunization programs?
- Better monitor program performance?
- Other reasons?
▪ Evaluation of effectiveness, coverage rates, reminder systems etc.
▪ Exploiting new technologies (E-health, mhealth) - ? Other new technologies (bar code scanning,
block chain, AI)
▪ Exploiting linkages – going beyond coverage assessments – vaccine safety and effectiveness – using
for projections/supply-chain management
▪ Matching needs for national/subnational solutions with integration at European level
▪ Role of citizens - empowerment

French context
How to best take into account the complexity of delivery of the immunisation
programme in France?
Link with multiple EHR?
IIS in the context of mandatory vaccination?
Cost benefit mind-set to secure efficient maintenance and focus on priorities?

Acknowledgments
Colleagues at ECDC, Kate Olsson
ECDC IIS Expert Group
Member States National Focal Points for VPD

Advantages of IIS
(non-exhaustive list)
▪ make it easier for clinicians to administer appropriate vaccines effectively and efficiently
▪ increase knowledge and acceptance of vaccines among patients and their caregivers
▪ improve vaccination tracking and timeliness
▪ make it easier to gain access to immunisation histories
▪ improve vaccination uptake and monitoring
▪ If well designed and implemented can be easy to use and well accepted
Great potential of linking IIS to broader healthcare system tools to measure health outcomes and provide
timely information for action to public health authorities and Ministries of Health

Terminology
What is an Immunisation Information Systems?
Immunisation information systems (IIS) are confidential, population-based, computerized information
systems that record, store, and provide access to individual immunisation information. They aim to be
comprehensive and community-wide, covering individuals in a specific geographic area across multiple
healthcare providers
Timely retrieval of immunisation history at the individual level enables the immunisation provider to
determine appropriate individual vaccinations and vaccine recipients to have a complete record of
vaccines received. Longitudinal monitoring of vaccine uptake and coverage facilitates decision-making at
the population level and the monitoring of vaccination policies. In addition to these functionalities, IIS can
offer other capabilities, such as vaccine supply and stock management, and adverse event reporting.
Different systems range in complexity and scope.

Developments - Publications
Peer-reviewed publication to
document the benefits of IIS

Terminology (take out)
IMMUNISATION RECORD
Paper registry or paper record
Case-based, Not easy retrieval of a person immunisation history, Fragmented information
ELECTRONIC PAPER REGISTRY OR ELECTRONIC IMMUNISATION RECORD
ELECTRONIC IMMUNISATION REGISTRIES (EIR)
Computerised, confidential, population-based information systems that contain data on vaccine doses
administered.
Main functionalities include vaccine coverage monitoring (e.g. by provider, by target groups, by antigens…) and
provide outputs for individual follow-up
IMMUNISATION INFORMATION SYSTEM (IIS)
Increased functionalities such as vaccine and supply stock management, AEFI reporting, reminder
systems, interfaces for the general public and healthcare professionals etc…
Digitalisation of an immunisation paper registry
Compilation of records (database)

System designing (maybe take out this slide and
just use slide 23 and below can be notes for you)
Problem --> Needs --> Key functions --> Data needs
Identify the problem
Dependent on the setting and according to set objectives.
To help define system needs, required functionalities and data needs
• Programmatic needs such as determining immunisation coverage levels in real-time
• Consolidating information from different IIS (e.g. regional IIS)
• Consolidating vaccine information collected by different providers

What data fields are required to meet
each functionality? (take out? Repeat of
the page before)
What fields must be captured to support the key functions?
To ensure complete information for the recording a person/patient’s
personal information the following fields must/should be captured by the
system:
▪ Surname(s)
▪ Given Name(s)
▪ Date of Birth
▪ Gender
▪ Birth Order
▪ Birth Location (Municipality/Local Jurisdiction/Country)
▪ Patient address
▪ Patient phone number
▪ …

Business requirements for enhancement/changes to
IIS – example from North Dakota IIS – Maybe take out
1 . General Information: Scope, Project references, Acronyms and abbreviations, Points of contact (key
stakeholders and others who provided input)
2. Current System Summary: Background (reasons for enhancements/changes), Current system functionality
(details on how current process works), Current methods and procedures (flow diagram of current workflow)
3. Proposed Methods and Procedures: Summary of improvements/enhancements (short overview of project),
Functional improvements (details about project requirements, flow diagram of new workflow after enhancements),
Summary of impact
4. Detailed Characteristics (i.e. specific performance requirements): Accuracy and validity checks needed in new
functionality; timing of functions; capacity limitations or requirements), System functions (including flow diagrams),
Input and output requirements
5. Design Considerations: System design including screen mock-ups and descriptions of changes to current screens
6. Security: Security control points (input controls, output controls, process controls), System monitoring and
auditing (considerations for logging, triggering criteria and identification information; audit trail considerations)

Take out? Proposed variable Justification and need
Vaccine provider
Name, Surname and ID of the vaccine
provider
For the identification of the vaccine provider
Location of the health facility or vaccination
centre
Type of vaccine provider (private/public)
Contact telephone
Email address
Vaccine Recipient
Unique ID
For the identification of the vaccine recipient
Name, surname, second name
Date of birth For the identification of the vaccine recipient and to
generate analysisSex
Place of residence For the identification of the vaccine recipient, contacting
the vaccine recipient, and to generate analysis
Telephone number and e-mail address For contacting the patient
Occupation For the determination of specific at-risk occupational
group
Name, surname, unique ID of parents or legal
tutor, and relationship to the patient
For the identification of the vaccine recipient parents or
legal guardian
Patient status indicator on the IIS: Provider
facility level
Other potential information fields: ethnicity,
patient multiple birth indicator, patient birth
order, birth region, birthing facility name
For analysis
Vaccination details
Date of administration For determining the vaccination status of the vaccine
recipient and determine appropriate upcoming vaccinationDose #
Brand name For the identification of the vaccine administered
Antigen(s) For the identification of the antigen administered
Batch number For the identification of the vaccine administered and to
generate analysis
Reason for refusal For specific analyses and inform actions
Reason for contra-indication
Type of vaccination (on or off-routine
programme, catch-up campaigns
For specific analyses

Access rights to IIS (n = 16 EU/EEA countries)
118Source: Derrough T, Olsson K, Gianfredi V, Simondon F, Heijbel H, Danielsson N, Kramarz P, Pastore-Celentano L. Immunisation Information Systems – useful

Possible Workshop Outcome
• To take the work forward
• Identify common issues
• Seek vehicle to analyse issues and develop ‘solution’
• Better care, better experience, better outcome

Brussels Meeting?
• Who? Stakeholders
• HL7, Paediatricians, Emergency Doctors, Ambulance, Child Patient NGOs,
School Health Service, DG Infso, Health Systems; Mobile Health World,
MOCHA, EUPHA C&AH
• Why? To identify
• Issues, Problems, necessary Research; prototyping; Field testing
• What proposals to submit where
• Outcome
• Working papers; concept exchange; outline submission(s)

Notes from discussion
IPS recommendations
• Update of vaccination registry
• Access to vaccination registry
• Sharing
• Citizen/GP
• PS info producer /consumer
• Referral asthma
• Access to good data
• Citizens add data/ qualifiers / quality/ learn/improve
•
• Provenance: health professionals access/use info
• Boundaries and process
• Demand/call obligation.

Rapporteur Notes
• Trillium II workshop in Gothenburg, April 25th 2018
• Various presentations were held circling around pediatric care, vaccination and patient summaries
• One example was the tetanus status of children
• Need for an emergency data set and data standards
• The emergency center should be able to receive information when a child is received from a school
• High degree of variation within primary pediatric care delivery, yet despite the variation of the delivery system, the data should be the same
• MOCHA international research readiness instrument
• Assessed children datasets and ran a standardized query. Out of 165 DBs, only 3 could answer the query
• Need for standardized data for HSPA
• Two upcoming questions: should recommendations be included in the IPS and what is the procedure of using the IPS?
• A difference exists between child care and adult care, a question of development and projection:
• From daily care, to school, to GP, to emergency care
• Question of access plays a role: different access between home, GP, ED, school, who has access and what level of access?
• Example of immunization information system and national vaccination systems:
• Again question of access and timeliness/actuality
• Citizens should have a read and write access to immunization systems to see and update their vaccination status
• On one hand, many countries offer the WHO international certificate of vaccination or prophylaxis but many times the patient him/herself is
responsible for collecting the information and keeping it up to date
• Citizens access to an immunization system can be a driver to improve the system
• It is a question of regulation/law/policy

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