1. Sponsored by
Healthdata.be
Standardisation of & data reuse for Belgian health registries
, HL7 Conference, Madrid
Maarten Landuyt & Johan Van Bussel

2. n = 3000 Clinical registries are necessary! Beneficial (11%)
BMJ Clinical Evidence (2014)
Likely to be
beneficial (24%)
Unknown effectiveness (50%)
n = 3000
Trade-off between
benefits and harms (7%)
Unlikely to be beneficial (6%)
Likely to be ineffective or harmful (3%)

3. Epidemiological surveillances are necessary!
Sabbe et al., (2012) Measles resurgence in Belgium, Eurosurveillance

4. BUT ! ?   ?   ? ?   ?   ?   ? ? ?  

5. The main cause of burn-out in physicians?
#1: increase administrative burden (70.4%)

6. “René, listen very carefully, I shall say this only once”
“Only once” = key principle of Action plan eHealth

7. 1 Healthdata’s ambition for healthcare registries
technical implementation: free & open
information architecture: technically neutral
technical service desk
set of business processes
Maximal reuse of existing data and linking of previously collected data (“only once” registration)
Each data provider receives timely feedback reports within 1 reporting environment
Less administrative burden & higher efficiency
= more time for patient ► higher quality of care
= more time for research ► higher quality of research
= lower costs

8. Healthdata.be at a glance
Use of National Registry Number
as ID
Technical description of each data collection
HD4DP
HD4RES
DATAWAREHOUSE (SAS)
HEALTHSTAT         
Registration
in Primary System
Data Capture
Secure Data Transfer & encoding of IDs
Data Monitoring
Data Validation
Data Storage
Analysis
BI-Reporting
Annotation & Correction Request
Trusted Third Party for encryption and pseudonymization
Generic healthdata.be architecture approved by:
WG Architecture: Positive advise (12/12/2014 & 06/03/2015)
Sectorial Committee health (Privacy commission): Authorization (21/04/2015)
eHealth-platform : Authorization (22/04/2015)

12. In production
N = 20
“To do”
N > 100

13. Interoperability Information architecture

14. Identification, typically available in authentic sources
Typology based on inventory of 8,000 variables collected by ca. 50% of current registries
Information needed in the context of continuity of care or internal administration.
Information should be available in primary systems (EHR, LIMS, …) in a structured and coded way
Registry A
Registry B
Identification, typically available in authentic sources
Registry C
Variables needed for scientific research question
Information mostly not available in primary systems (EHR, HIMS, LIMS, …)
Registry D

15. The collection of health care data: need for interoperability
Organization A
Organization B
Legal and regulatory
Policy
Care process
Information
Applications
IT Infrastructure
Compatible legislation and regulations
Collaboration agreements
Alignment of care processes and workflows
Data model, terminologies, formatting
Integration in healthcare applications
Communication and network protocols
Information
Data model, terminologies, formatting
Information
Redefined eHealth European Interoperability Framework (IHE)

16. Standardisation of registry content
Implementation by NFU:
“Clinical Building Blocks”
International standard: ISO/TS 13972:2015(en): Health informatics — Detailed Clinical Modeling, characteristics and processes.
Assets
(products)
N=42
Method
The following organizers and participants contributed to the Technical Specification: Health Level 7 International (HL7) (USA), — National ICT Institute in Health Care (NICTIZ, Netherlands), National Health Service (NHS) (England), Canada Infoway (Canada), National E-Health Transition Authority (NEHTA),(Australia), OpenEHR (International), EN association (Europe), Intermountain Healthcare (USA), …

17. Example of a Clinical Building Block “Breathing”
Values: SNOMED-CT

18. Standardisation of healthdata registries

19. 42 CBB’s 46 Projects mapped 100% 3142 items items match w/a CBB
items do not match w/a CBB
100%

20. covers 63%
of 3142
variables

21. Registry standardisation in 3 phases
Map existing registries to CBBs
Phase 2
Adjust questions to CBB structure
Phase 3
CBB-based registries

22. REUSE of data through a cbb-based API on hd4dp

23. Interfacing without CBBs
Input formats (m)
Registries (n)
Basic dataset
KMEHR
EMR
Registry 1
HL7v3 CDAr2
LIMS
Registry 2
HL7 FHIR
EHR
Registry 3 … … …
m * n connections (max)

24. versus m*n connections from previous slide
Interfacing with CBBs
Input formats (m)
Registries (n)
Basic dataset
KMEHR
EMR
Registry 1
HL7v3 CDAr2
CBBs
LIMS
Registry 2
HL7 FHIR
EHR
Registry 3 … … …
m + n connections (max)
versus m*n connections from previous slide

25. Q&A www.healthdata.be healthdata@wiv-isp.be healthdata be
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