The healthdata.be project aims to improve the collection and management of healthcare data in Belgium by addressing issues such as repeated data registration, low transparency, and privacy concerns. It advocates for a standardization of data using clinical building blocks, which are structured data specifications intended for use across various health domains. The initiative is supported by legal frameworks and collaborative efforts between federal health authorities, healthcare institutions, and IT organizations, with a focus on enhancing public health knowledge and reducing administrative burdens.

1. The healthdata.be project:
Workshop "Clinical Building Blocks“
by NICTIZ & NFU
RIZIV-INAMI, Brussels, 27.10.2015

2. 150min.
Part 1 Part 2
Part 3

3. healthdata.be
data we care for

4. healthdata.be
data we care for
Collection of health (care) related data
in Belgium: “AS-IS”
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

5. Growing awareness
Milestone Date
1. 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.be
data 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

6.  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. 7
25%
48%
27%
N=159
Survey
completed
Survey +
Item list
completed
No response
*
AP18: Inventory (2013-14)

8. 8

9. 9

10. Update AP18!

11. Variables needed for
scientific research
question
healthdata.be
data 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.be
data we care for

12.  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

13. healthdata.be
data we care for

14. Variables needed for
scientific research
question
healthdata.be
data 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 D
Clinical Building Blocks
healthdata.be
data we care for

15. Secure Data
Transfer
Data
Validation
Annotation
& Correction
Request
Data
Storage
BI-Reporting
Registration
in Primary
System
healthdata.be
data we care for
HEALTHSTATHD4DP
Analysis
Data Collection
supported by healthdata.be
Data Management & BI-Reporting
supported by healthdata.be
       
healthdata.be: the end-to-end process
healthdata.be
Data
Captation
Data
Monitoring
HD4RES DATAWAREHOUSE (SAS)
 

16. Healthdata.be
Catalogue (PROD) with
Registry form definition
Data provider
Sending Data Through an
API & Prefilling Forms for
less Manual Work
Legend
Identifiers (SSIN, RIZIV, …)
Neeadata (internal ID, type data, …)
Medical data
CSV
24/7
HD4DP
and / or


HD4DP : Healthdata for Data Providers
healthdata.be
data 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

17. 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.be
http://www.plan-esante.be

18. 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 Registries
Official proclamation dd. 14.10.2015 by IMC public health

19. Q&A
healthdata@wiv-isp.be
www.healthdata.be
healthdata be
@healthdatabe

20. 150min.
Part 1 Part 2
Part 3

21. Clinical Building Blocks
for the standardisation of
patient information for
multiple usage
October 27, 2015
Brussels
WIV-ISP
Michiel Sprenger,
Fred Smeele,
Claartje Hülsmann
the Netherlands’ national institute of
IT in Healthcare (Nictiz)

22. Us…
• Michiel Sprenger, Senior Adviser
• Fred Smeele, Program Manager
• Claartje Hülsmann, Quality Manager
• Nictiz: national competence centre for
eHealth & interoperability

23. Theme
Unambiguous and one step
documenting at the
clinical source
Multiple usage
‘Documenting at the Source’

24. Agenda of presentation
1. Introduction Nictiz, IT in Healthcare in NL
2. Problem recognition and history of our
approach
3. Clinical Building Blocks
4. State of affairs in implementation in NL
5. Governance, development, change
management and maintenance

25. Agenda of presentation
1. Introduction Nictiz, IT in Healthcare in NL
2. Problem recognition and history of our
approach
3. Clinical Building Blocks
4. State of affairs in implementation in NL
5. Governance, development, change
management and maintenance

26. 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

27. The Netherlands in EU
Area: #23/28
Pop: #8/28
(16,7M)
27

28. 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

29. 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

30. Healthcare in NL
• ~100 hospitals
• 8 university medical centres (UMCs)
• Outpatient specialist care mainly
organised by hospital organisations
• Growing “private” sector, mainly
outpatient
30

31. 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 problems
are large on all levels
•  Urge for standards
•  Much debate (“polder”-model)
31

32. 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

33. Agenda of presentation
1. Introduction Nictiz, IT in Healthcare in NL
2. Problem recognition and history of our
approach
3. Clinical Building Blocks
4. State of affairs in implementation in NL
5. Governance, development, change
management and maintenance

34. 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
• ...

35. Causes
• Goal specific registrations (>150!!)
• Variations between hospitals in
definitions
• Variations within hospitals in
definitions
• Gaps
• Overlaps

36. Usage
Patient Care
Transfer of patients
Research
Management
information
Quality indicators
Financial /
reimbursement
Etc.
UsageRegistrations
Financial
Quality 1
Quality 2
Patient care 1
Patient care 2
GAPS
OVERLAPS
INCONSISTENCIES

37. Initiative by
• NFU: the federation of University
Medical Centers (8)
• Nictiz: national competence center
for eHealth and interoperability
• To improve the situation

38. Generic
informa
tion
(core
set)
Disease / problem
specific
information
Usage
Patient Care
Transfer of patients
Research
Management
information
Quality indicators
Financial /
reimbursement
Etc.
Selec
tion,
Aggre
gatio
n
Deriv
ation
etc
Register once,
unambiguously,
IN (or close to)
primary process
Multiple Usage
Primary
process
Long term ideal

39. Way forward
• Standardise Information
• Separate from Implementation and
usage
• Standardise EHRs ánd registers in
their information content

40. Agenda of presentation
1. Introduction Nictiz, IT in Healthcare in NL
2. Problem recognition and history of our
approach
3. Clinical Building Blocks
4. State of affairs in implementation in NL
5. Governance, development, change
management and maintenance

41. 5 layer solutions
Care Process
Information
Applications
Technology
Policy Directors
Health profs, care mgmt
HPs, informaticians
Informaticians, IT profs
IT profs

42. Care
Info
Appl
Clinical Building Blocks

43. Derivation
Care
Info
Appl
Professionals: physicians,
nurses, pharmacists, etc
EPD content Transfer - Communication Quality register Etc
HL7-CDA FHIR
CBB
Definition and maintenance
CBB CBB CBB CBB CBB

44. 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

45. Clinical Building Blocks
Stable, re-usable
clinical building blocks
usage 1: transfer
usage 2: quality indicators
usage 3: EHR

46. 43 of medical origin

47. 44 of nursing origin

48. Example: heart rhythm

49. Example: heart rhythm

50. Example: heart rhythm

51. Example: heart rhythm

52. 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

53. 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

54. Generic
informa
tion
(core
set)
Disease / problem
specific
information
Usage
Patient Care
Transfer of patients
Research
Management
information
Quality indicators
Financial /
reimbursement
Etc.
Selec
tion,
Aggre
gatio
n
Deriv
ation
etc
Register once,
unambiguously
IN primary process
Multiple Usage
Primary
process
Current coverage

55. Working cycle
1. Define building blocks
2. Implement, i.e. make usage
possible
3. Clinical usage: document in care
process
4. Use information, in transfers,
research, etc
5. Evaluate

56. Agenda of presentation
1. Introduction Nictiz, IT in Healthcare in NL
2. Problem recognition and history of our
approach
3. Clinical Building Blocks
4. State of affairs in implementation in NL
5. Governance, development, change
management and maintenance

57. 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

58. 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

59. Agenda of presentation
1. Introduction Nictiz, IT in Healthcare in NL
2. Problem recognition and history of our
approach
3. Clinical Building Blocks
4. State of affairs in implementation in NL
5. Governance, development, change
management and maintenance

60. Governance in NFU/Nictiz program
Steering
committee
Program
managementteam
Advisory
Board
‘Kerngroep’
Overall review team
(mainly information
architects)
Project
1
Project
2
Project
n
….
…

61. 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

62. 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

63. Conclusions
• So far, assumptions valid
• Develop our methodology further
• Will have first implementations
shortly for transfer and quality
• Breakthrough in the standardisation
of information

64. Centered around this threefold agenda:
• Unambiguous set of definitions of
information
• How to register (in the primary
process)
• How to extract

65. Generic
informa
tion
(core
set)
Disease / problem
specific
information
Usage
Patient Care
Transfer of patients
Research
Management
information
Quality indicators
Financial /
reimbursement
Etc.
Selec
tion,
Aggre
gatio
n
Deriv
ation
etc
Register once,
unambiguously,
IN (or close to)
primary process
Multiple Usage
Primary
process
Long term ideal

67. further information...
• www.nictiz.nl
• www.nfu.nl
• sprenger@nictiz.nl
• smeele@nictiz.nl
• hulsmann@nictiz.nl

68. 150min.
Part 1 Part 2
Part 3

70. 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 Registries
Official proclamation dd. 14.10.2015 by IMC public health

74.  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

76. Your expertise, experience and enthusiasm are most welcome!
Go to wiki or send email to healthdata@wiv-isp.be

77. BOB: “Can we build it?”
ALL: “Yes we can!”

78. Q&A
healthdata@wiv-isp.be
www.healthdata.be
healthdata be
@healthdatabe