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The healthdata.be project:Workshop "Clinical Building Blocks“by NICTIZ & NFU
RIZIV-INAMI, Brussels, 27.10.2015
150min.
Part 1 Part 2
Part 3
healthdata.bedata we care for
healthdata.bedata we care for
Collection of health (care) related data in Belgium: “AS-IS”
WIV & RIZIV
N = 42
1
2
3
4
5
7
6
Stage
Stage
Stage
Stage
Stage
Stage
Stage
Repeated registration of same information: high costs
for data providers (ánd for researchers ánd government!)
Heterogeneous method & content: low transparency
and high administrative burden & complexity
Limited privacy & security
Insufficient return on information
Impact
Growing awareness
Milestone Date1. Van de Sande, et al., Inventory of databases health care, KCE Reports 30A, Brussels: KCE
2006
2. Belgian Court of Audit, Scientific support of the federal health policy, BCA Reports, Brussels: BCA
2010
3. Coussée, et al., Charter High-quality recording of data by the healthcare sector, Brussels; Zorgnet Vlaanderen
2010
4. Actionplan eHealth 2013-2018: Action point 18 “Inventory and consolidation registers”
2012
5. Law of 5 May 2014: principle of “only once” data collection in all activities of governemental services and institutes
2014
6. Federal (9.10.2014) coalition agreement prioritizes reduction of administrative burden of health care professionals: “Only once”!
2014
healthdata.bedata we care for
Van de Sande, et al. (2006) Inventory of databases health care, KCE Reports 30A;
Belgian Court of Audit (2010) Scientific support of federal health policy, BCA Reports;
Coussée (2010) Charter High-quality recording of data from the healthcare sector, Brussels; Zorgnet Vlaanderen;
Action plan eHealth 2013-2018: Action point 18 “Inventory and consolidation registers”;
Law 5 May 2014: principle of “only once” data collection in activities gov. services & institutes;
Federal (9.10.2014) coalition agreement prioritizes reduction of administrative burden of health care professionals: “Only once”!
Federal Minister Maggie De Block (25.04.2015) : Reform plan financing of hospitals.
14.10.2015: Action plan eHealth 2013-2018: Version 2.0
Growing Awareness
Law of 10 April 2014 various provisions related to health: Section 9: initiative RIZIV-INAMI and WIV-ISP: healthdata.be;
A new service within the legal body of the Institute of Public Health (WIV-ISP), funded by RIZIV-INAMI (20/04/2015, contract of open-end duration)
Facilitate (in terms of technology and process management) data exchange between healthcare professionals and researchers according to only once principle and re-use of data, in order to increase public health knowledge and to adjust health care policy, with respect for privacy of patient, healthcare professional and medical confidentiality.
Intergovernmental services for both federal and community/regional governments responsible for health and healthcare, and private legal bodies (indirectly);
2014-2017: focus on uniformisation of 42 existing registers managed by WIV-ISP and RIZIV.
healthdata.be
7
25%
48%
27%
N=159
Survey completed
Survey + Item list
completed
No response
*
AP18: Inventory (2013-14)
8
9
Update AP18!
Variables needed for scientific research
question
healthdata.bedata we care for
Signalitics, typical available in authentic sources
Information needed in context of continuity of care or internal
administration
Information mostly not available in primary systems
EPD, HIMS, LIMS, …)
The challenge for scientific data collection
Register A Register B
Register C
Register D
healthdata.bedata we care for
80 registers = > 8000 variables: need for standards!
Clinical Building Blocks: introduction of a national minimal set
of stable, structured, specialism independent, technical neutral,
and reusable data specifications for (hospital) EPD. Collaboration
with NICTIZ & NFU.
SNOMED-CT: Prioritized standard for Lists of Values (LOV’s) in
Clinical Building Blocks.
Terminology
healthdata.bedata we care for
Variables needed for scientific research
question
healthdata.bedata we care for
Signalitics, typical available in authentic sources
Information needed in context of continuity of care or internal
administration
Information mostly not available in primary systems
EPD, HIMS, LIMS, …)
The use of Clinical Building Blocks
Register A Register B
Register C
Register DClinical Building Blocks
healthdata.bedata we care for
Secure Data Transfer
Data Validation
Annotation & Correction
Request
Data Storage BI-ReportingRegistration
in Primary System
healthdata.bedata we care for
HEALTHSTATHD4DP
Analysis
Data Collection supported by healthdata.be
Data Management & BI-Reportingsupported by healthdata.be
healthdata.be: the end-to-end process
healthdata.be
Data Captation
Data Monitoring
HD4RES DATAWAREHOUSE (SAS)
Healthdata.be
Catalogue (PROD) with Registry form definition
Data provider
Sending Data Through an API & Prefilling Forms for less Manual Work
LegendIdentifiers (SSIN, RIZIV, …)Neeadata (internal ID, type data, …)Medical data
CSV
24/7
HD4DP
and / or
HD4DP : Healthdata for Data Providers
healthdata.bedata we care for
• All manual input remains available (structured and coded, according to [inter]national standard) in local database of DP:
• Import in future upgrade of EPD/LIMS;
• Re-Use for internal BI & QI
All manual input remains available (structured and coded, according to [inter]national standard, based on CBBs) in local database of DP:
• Import in future upgrade of EPD/LIMS;
• Re-Use for internal BI & QI
• All manual input remains available (structured and coded, according to [inter]national standard) in local database of DP:
• Import in future upgrade of EPD/LIMS;
• Re-Use for internal BI & QI
Clinical Building Blocks .BE
Interministerial agreement dd. 14.10.2015: Continuous actualization of inventory of patient
registries is mandatory (healthstat.be); Procedures and criteria for new projects and
continuation of existing projects; Generic Business Processen for all reccurent scientific
data collection projects; Generic architecture of healthdata-platform for all
reccurent scientific data collection projects; Use of “Clinical Building Blocks” by all reccurent
scientific data collections; ---
Update AP18!
http://www.plan-egezondheid.behttp://www.plan-esante.be
WAT TIMING WIE
18.11
“Een Belgische adaptatie wordt uitgevoerd voor elke beschikbare specialisme overstijgende en technisch neutrale NFU-NICTIZ Clinical Building Block, en wordt na validatie in een publiek toegankelijke centrale digitale catalogus gepubliceerd (http://www.healthdata.be/cbb) (Zie ook AP2.7 en AP13).”
vóór einde 2016_Q1
Coördinatie: WIV, via het HD-platform;Uitvoering: Nederlandstalige en
Franstalige clinici; Begeleiding en validatie: WG AP2,
Terminologie Centrum (WG AP13), en Werkgroep Structurering van Elementen;
Beheer cataloog: WIV, via HD-platform.
18.12
“Alle (a) nieuwe en (b) bestaande recurrente beleidsondersteunende wetenschappelijke gegevens-verzamelingen worden inhoudelijk samengesteld doormiddel van de voor België beschikbare gevalideerde Clinical Building Blocks (Zie ook AP2.7).”
vanaf 2016_Q1 (a);vanaf 2016_Q1 gefa-
seerd volgens kalender (b: voor allen);
uitgevoerd vóór einde 2017_Q4 (b: voor 42 projecten van WIV en RIZIV).
Coördinatie: WIV, via het HD-platform;Uitvoering: verantwoordelijken van
wetenschappelijke gegevensverza-melingen.
18.13
“De waardenlijsten van Clinical Building Blocks in alle (a) nieuwe en (b) bestaande recurrente beleidsondersteunende wetenschappelijke gegevensverzamelingen in domein van gezondheid en gezondheidszorg, worden prioritair Nee SNOMED-CT concepten opgemaakt (Zie ook AP2.7 en AP13). “
vanaf 2016_Q1 (a) ;vanaf 2016_Q1 gefas-
eerd volgens kalender (b: voor allen);
uitgevoerd vóór einde 2017_Q4 (b: voor 42 projecten van WIV en RIZIV).
Coördinatie: WIV, via het HD-platform;Uitvoering: wetenschappelijk
verantwoordelijken van de gegevensverzamelingen;
Begeleiding en validatie: Terminologie-Centrum;
Evaluation Action Plan eHealth 2013-2018: Revision Action Point 18: “Inventory & Consolidation of RegistriesOfficial proclamation dd. 14.10.2015 by IMC public health
Q&Ahealthdata@wiv-isp.be
www.healthdata.be
healthdata be
@healthdatabe
150min.
Part 1 Part 2
Part 3
Clinical Building Blocksfor the standardisation of
patient information formultiple usage
October 27, 2015
BrusselsWIV-ISP
Michiel Sprenger, Fred Smeele,Claartje Hülsmann
the Netherlands’ national institute ofIT in Healthcare (Nictiz)
Us…
• Michiel Sprenger, Senior Adviser
• Fred Smeele, Program Manager
• Claartje Hülsmann, Quality Manager
• Nictiz: national competence centre for eHealth & interoperability
ThemeUnambiguous and one step
documenting at theclinical source
Multiple usage
‘Documenting at the Source’
Agenda of presentation
1. Introduction Nictiz, IT in Healthcare in NL2. Problem recognition and history of our
approach3. Clinical Building Blocks4. State of affairs in implementation in NL5. Governance, development, change
management and maintenance
Agenda of presentation
1. Introduction Nictiz, IT in Healthcare in NL2. Problem recognition and history of our
approach3. Clinical Building Blocks4. State of affairs in implementation in NL5. Governance, development, change
management and maintenance
Nictiz• Founded in 2002• The national competence centre for
health IT• ~40 people• 95% financed by ministry of health• Tasks:
• Define and maintain standards• Offer knowledge & advice• Connect people and organizations• Monitor the development of IT in HC
• No task in IT infrastructure deployment (since 2011) 26
The Netherlands in EU
Area: #23/28
Pop: #8/28(16,7M)
27
Healthcare in NL
• Organisations privately structured• Finance: partly regulated:
• Insurance: basis for everyone, + extra packages – 50%
• Increasingly market driven model through role of insurance companies
• Disabled, elderly, etc: National Insurance (AWBZ) – 50%
• Total ~€80 billion
Healthcare in NL
• Well established primary care• Management of chronic diseases• Locum tenancy services for GP’s (1:40)• NL #1 in European Health Consumer
Index• NL high in capital spending in
Healthcare
Healthcare in NL
• ~100 hospitals• 8 university medical centres (UMCs)• Outpatient specialist care mainly
organised by hospital organisations• Growing “private” sector, mainly
outpatient
30
Healthcare in NL
• Multi-enterprise business model:• 100 hospitals, 4500 GP practices, 1800
pharmacies, 100 locum tenancy services for GP’s, each responsible for own finance, medical policies, investments, and IT
• Thus: interoperability problemsare large on all levels
• Urge for standards• Much debate (“polder”-model)
31
IT proliferation in the Netherlands• Hospitals:
• PACS 100%• HIS 100%• EHRs: number is growing, ~70%
• General Practitioners: 100%• Community Pharmacies: 100%• Nursing homes: 30%
32
Agenda of presentation
1. Introduction Nictiz, IT in Healthcare in NL2. Problem recognition and history of our
approach3. Clinical Building Blocks4. State of affairs in implementation in NL5. Governance, development, change
management and maintenance
Problem• 10 years of EHR development in hospitals• But… information captured for patient
care can NOT (always) be re-used• For:
• Transfer of patients to other institutions• Quality indicators• Reimbursement• Epidemiology• ...
Causes• Goal specific registrations (>150!!)• Variations between hospitals in
definitions• Variations within hospitals in
definitions• Gaps• Overlaps
Usage
Patient Care
Transfer of patients
Research
Management informationQuality indicators
Financial / reimbursementEtc.
UsageRegistrations
Financial
Quality 1
Quality 2
Patient care 1
Patient care 2
GAPSOVERLAPS
INCONSISTENCIES
Initiative by
• NFU: the federation of University Medical Centers (8)
• Nictiz: national competence center for eHealth and interoperability
• To improve the situation
Generic informa
tion(core set)
Disease / problem specific
information
Usage
Patient Care
Transfer of patients
Research
Management informationQuality indicators
Financial / reimbursementEtc.
Selection,
Aggregatio
n
Derivation
etc
Register once, unambiguously,IN (or close to) primary process
Multiple Usage
Primaryprocess
Long term ideal
Way forward• Standardise Information
• Separate from Implementation and usage
• Standardise EHRs ánd registers in their information content
Agenda of presentation
1. Introduction Nictiz, IT in Healthcare in NL2. Problem recognition and history of our
approach3. Clinical Building Blocks4. State of affairs in implementation in NL5. Governance, development, change
management and maintenance
5 layer solutions
Care Process
Information
Applications
Technology
Policy Directors
Health profs, care mgmt
HPs, informaticians
Informaticians, IT profs
IT profs
Care
Info
Appl
Clinical Building Blocks
Derivation
Care
Info
Appl
Professionals: physicians, nurses, pharmacists, etc
EPD content Transfer - Communication Quality register Etc
HL7-CDA FHIR
CBB
Definition and maintenanceCBB CBB CBB CBB CBB
Assumptions• The information can be structured
into a finite number of generic building blocks:• As large as needed (complete clinical
concepts)• As small as possible (genericity, re-
usability)• Generic and specific blocks will be
necessary• Usage possible for different purposes
Clinical Building Blocks
Stable, re-usableclinical building blocks
usage 1: transfer
usage 2: quality indicators
usage 3: EHR
43 of medical origin
44 of nursing origin
Example: heart rhythm
Example: heart rhythm
Example: heart rhythm
Example: heart rhythm
Standardisation by:• Structure:
• Collection of CBBs• Internal structure of CBBs (information
elements)• Content of CBBs:
• Coding: SNOMED, LOINC, text, etc• Value lists: definition
• Filling with values in real practice• E.g. minimum datasets, summaries, etc
Method of working
• Started with generic transfer data• First medical• Extend with nursing
• Investigate specific disease care process plus quality indicators: head and neck tumors
Generic informa
tion(core set)
Disease / problem specific
information
Usage
Patient Care
Transfer of patients
Research
Management informationQuality indicators
Financial / reimbursementEtc.
Selection,
Aggregatio
n
Derivation
etc
Register once, unambiguouslyIN primary process
Multiple Usage
Primaryprocess
Current coverage
Working cycle1. Define building blocks 2. Implement, i.e. make usage possible3. Clinical usage: document in care
process4. Use information, in transfers,
research, etc5. Evaluate
Agenda of presentation
1. Introduction Nictiz, IT in Healthcare in NL2. Problem recognition and history of our
approach3. Clinical Building Blocks4. State of affairs in implementation in NL5. Governance, development, change
management and maintenance
State of affairs implementation in NL
• Introduction first set CBBs : March 2013• After March 2013:
• 5 Meetings with suppliers (EHR in hospitals): discussion on concept of CBB, requests for change from suppliers
• 2 subsequent releases• Sept 2015: extension of set CBB with
‘Nursing’ CBBs
State of affairs implementation in NL
• Concept of CBB is broadly accepted.• First implementations in hospital EHRs:
• AMC (EPIC, Amsterdam, October 2015),• VUmc, (Epic, Amsterdam, spring 2016)• Radboudumc (EPIC, Nijmegen, Q4 2013,
partly) • In several (quality-)registers: 5
implementations planned in 2016
Agenda of presentation
1. Introduction Nictiz, IT in Healthcare in NL2. Problem recognition and history of our
approach3. Clinical Building Blocks4. State of affairs in implementation in NL5. Governance, development, change
management and maintenance
Governance in NFU/Nictiz program
Steering committee
Program managementteam
Advisory Board
‘Kerngroep’Overall review team(mainly information
architects)
Project 1
Project 2
Project n
….…
Development
Development projects:• New CBBs (or extensions existing
CBBs) for specific domains. E.g. Oncology
• Harmonize CBB’s with existing information standards. E.g. existing Nursing standard for transfer
• Broadening to other sectors: general hospitals / mental health
Change management and maintenance
Process of maintenance CBBs linked to roles in maintenance of information standards (NEN 7522) :
• User• Owner• Financier• Autoriser• Expert (group)• Functional Manager• Technical Manager• Distributor
Conclusions• So far, assumptions valid• Develop our methodology further• Will have first implementations
shortly for transfer and quality• Breakthrough in the standardisation
of information
Centered around this threefold agenda:• Unambiguous set of definitions of
information
• How to register (in the primary process)
• How to extract
Generic informa
tion(core set)
Disease / problem specific
information
Usage
Patient Care
Transfer of patients
Research
Management informationQuality indicators
Financial / reimbursementEtc.
Selection,
Aggregatio
n
Derivation
etc
Register once, unambiguously,IN (or close to) primary process
Multiple Usage
Primaryprocess
Long term ideal
Standardisatio
n of EHRs
Standardisation of registers
Documenting at the source
further information... • www.nictiz.nl• www.nfu.nl
• sprenger@nictiz.nl• smeele@nictiz.nl• hulsmann@nictiz.nl
150min.
Part 1 Part 2
Part 3
WAT TIMING WIE
18.11
“Een Belgische adaptatie wordt uitgevoerd voor elke beschikbare specialisme overstijgende en technisch neutrale NFU-NICTIZ Clinical Building Block, en wordt na validatie in een publiek toegankelijke centrale digitale catalogus gepubliceerd (http://www.healthdata.be/cbb) (Zie ook AP2.7 en AP13).”
vóór einde 2016_Q1
Coördinatie: WIV, via het HD-platform;Uitvoering: Nederlandstalige en
Franstalige clinici; Begeleiding en validatie: WG AP2,
Terminologie Centrum (WG AP13), en Werkgroep Structurering van Elementen;
Beheer cataloog: WIV, via HD-platform.
18.12
“Alle (a) nieuwe en (b) bestaande recurrente beleidsondersteunende wetenschappelijke gegevens-verzamelingen worden inhoudelijk samengesteld doormiddel van de voor België beschikbare gevalideerde Clinical Building Blocks (Zie ook AP2.7).”
vanaf 2016_Q1 (a);vanaf 2016_Q1 gefa-
seerd volgens kalender (b: voor allen);
uitgevoerd vóór einde 2017_Q4 (b: voor 42 projecten van WIV en RIZIV).
Coördinatie: WIV, via het HD-platform;Uitvoering: verantwoordelijken van
wetenschappelijke gegevensverza-melingen.
18.13
“De waardenlijsten van Clinical Building Blocks in alle (a) nieuwe en (b) bestaande recurrente beleidsondersteunende wetenschappelijke gegevensverzamelingen in domein van gezondheid en gezondheidszorg, worden prioritair Nee SNOMED-CT concepten opgemaakt (Zie ook AP2.7 en AP13). “
vanaf 2016_Q1 (a) ;vanaf 2016_Q1 gefas-
eerd volgens kalender (b: voor allen);
uitgevoerd vóór einde 2017_Q4 (b: voor 42 projecten van WIV en RIZIV).
Coördinatie: WIV, via het HD-platform;Uitvoering: wetenschappelijk
verantwoordelijken van de gegevensverzamelingen;
Begeleiding en validatie: Terminologie-Centrum;
Evaluation Action Plan eHealth 2013-2018: Revision Action Point 18: “Inventory & Consolidation of RegistriesOfficial proclamation dd. 14.10.2015 by IMC public health
NOW: Review, modification, translation of existing
building blocks, their data elements and list of values;
LATER: Development of new building blocks, data
elements and list of values.
Priorities
Your expertise, experience and enthusiasm are most welcome!Go to wiki or send email to healthdata@wiv-isp.be
BOB: “Can we build it?”ALL: “Yes we can!”
Q&Ahealthdata@wiv-isp.be
www.healthdata.be
healthdata be
@healthdatabe
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