Infosession for IQED dataproviders (14-22.04.2016)

The healthdata.be project:
Minimalisation of registration burden,
Maximalisation of Return On Information
12.04.2016 - Session d’information pour les participants au registre IPQED

healthdata.be
data we care for
Structure
• Presentation of healthdata services
• Current status & Planning
• Onboarding
• Questions
healthdata.be
data we care for

healthdata.be
data we care for

healthdata.be
data we care for
Collection of health (care) related data
in Belgium (n > 160 projects): “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

 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.
 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)
 Intergovernmental services for both federal and
community/regional governments responsible for health and
healthcare, and private legal bodies (indirectly);
healthdata.be

healthdata.be
data we care for
Healthdata.be will focus on the simplification,
standardization and automatization of the:
 Business processes
 Data collection architecture
 Information architecture (terminology)
 Data management
 Feedback reporting
Simplification

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
       
healthdata.be: the end-to-end process
healthdata.be
Data
Captation
Data
Monitoring
HD4RES DATAWAREHOUSE (SAS)
  HD4DP: Free and open source local client software (API*
based with eForms) managed by HD Catalogue;
 “Open” architecture approved by:
 WG Architecture: Positive advise (12/12/2014 &
06/03/2015) generic healthdata architecture;
 Sector Committee health (Privacy commission):
Authorization (21/04/2015) generic healthdata
architecture;
 eHealth-platform : Authorization (22/04/2015) generic
healthdata architecture;
 Successful installations at >60 hospitals; in production since
14.09.2015.
 Industry: integration HD4DP in their (messaging) software
*API: Application Programming Interface
Architecture

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
       
healthdata.be
Data
Captation
Data
Monitoring
 

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, …)
Metadata (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




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
       
healthdata.be
Data
Captation
Data
Monitoring


ETK & E2E Encryption
eHealthBox with Codage
Legend
Identifiers (SSIN, RIZIV, transaction ID, ..)
Metadata (timestamp, type data, …)
Personal data (medical or other,
possibly KMEHR based)
Coded Identifiers
Encrypted Data
eHealth has never access to
medical data or metadata
Healthdata never receives
the original identifier, but
can reconcile different
entries
The data provider never
receives the coded
identifiers
CSV CSV
CSV
CSV
CSV
CSV
CSV
CSV
 
 

 
HD4RES
HD4DP
healthdata.be
data we care for
Secure transfer of data and encoding of identifiers

 Secure: strict user & access management (Only HD
staff);
 Privacy: “registry” specific encoding of identifiers (by
HD);
 Auditable: logs of who has seen what, how and when
(IBM InfoSphere Guardium);
 Standardized: common technology (DB2, SAS BI) and
standards across registers;
 HD Security officer (Ir. Nand Staes);
 Location: Data center of Directorate General Statistics
and Economic Information (FOD ECO-DGSEI): Contract
and SLA available.
Data storage

 Secure: strict user access management (Only authorized project
managers and researchers), through VPN, to MICRO data;
 Current stat. software: SAS; 2016: R and STATA
 Privacy: “analysis” specific encoding of identifiers (by HD) +
Statistical Disclosure Control by external MD-statistician +
Auditable (IBM InfoSphere Guardium);
 Secundary use(rs) and cross-linking registers = possible ONLY
with proper authorization approvals.
Data analysis

17
 Healthstat.be (website; live 6/2016) as a secure reporting
platform, with only aggregated data;
 Objective: to give Return on Information (ROI) to data
providers (reports designed by data providers), and up-to-date
reporting for governments and stakeholders;
 2 sections: Authorized section for register stakeholders (data
providers, government, register project managers, …), with
reporting tailored for each user profile (UAM by eHealth);
 Public section available for everyone.
BI-Reporting

 Trusted Third Party: encryption (data and message) and
pseudonymisation by eHealth platform;
 Secure DWH: strict user & access management (Only HD
staff);
 Privacy: “register” & “analysis” specific encoding of
identifiers (by HD);
 Auditable: logs of who has seen what, how and when
(IBM InfoSphere Guardium) + web portal access by
Security officers;
 HD Security officer (Ir. Nand Staes) and responsible MD
(Dr. Michel Legrand);
 End-to-End PEN tests by independent specialists;
 Data center: FOD ECO-DGSEI: Contract & SLA available.
Security

 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

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
Clinical building blocks
healthdata.be
data we care for

Example Clinical Building block: “breathing”
healthdata.be
data we care for
Values: SNOMED-CT

N=80
N=14
Building block
No building block
N=16
15
14
14
8
3
2221111
be.en.hd.TransferProcedure be.en.hd.MedicationPrescription
be.en.hd.TransferConcern be.en.hd.TransferLaboratoryResults
be.en.hd.Patient be.en.hd.Smoking
be.en.hd.Encounter be.en.hd.MedicalEquipment
be.en.hd.BloodPressure be.en.hd.Caregiver
be.en.hd.CareProvider be.en.hd.BodyWeight
be.en.hd.BodyHeight
Potential use of Building
Blocks in registry X
Type of Building Blocks that
could be used in registry X
healthdata.be
data we care for
Use of Clinical Building Blocks (CBB’s) in a real registry

Use of Clinical Building Blocks (CBB’s) in a real registry
healthdata.be
data we care for

Deployment HD4DP in Belgian general and academic hospitals
: HD4DP installed
: To-do

Wave 1 Wave 2 Wave 3
Bel. Cystic Fibrosis Reg. Bel. HIV-AIDS Surveillance Ambulatory Care Health Information Lab
Bel. Early Warning System for Drugs Bel. HIV-AIDS Viral Loads Bel. Treatment Demand Indicator Reg.
Bel. Haemophilia Reg. Bel. HIV-AIDS Cohort Study Declaration Infect. Dis. Brussels-Capital region
Bel. Neuromuscular Disease Reg. Euro. Antimicrob. Resist. Surv. Netw. Declaration Infect. Dis. Walloon Region
Central Register Rare Dis. Euro. Point Prevalence Surv. >> Wave 4 Hand hygiene
IQED - Initiative Quality promotion and
Epidemiology in Diabetes care
Surv. Infect. Dis. in Children Healthcare Associated Infect. & Antimicrobial
Use in Euro. Long Term Care Facilities
IQED children and adolescents Nat. Surv. Healthcare Associated Infect. in
Intensive Care Units
Qermid©Coronaire stents
IQED Foot clinics Nat. Surv. Influenza Qermid©Endoprothesen
Nat. Surv. Antimicrobial Use in Bel. Hosp. Nat. Surv. Meticillin resistant Staphylococcus
aureus in Bel. Hosp.
Qermid©Hartdefibrillatoren
Sent. Hosp. for Severe Acute Resp. Illness Nat. Surv. multi-resistant micro-organisms in Bel.
Hosp.
Qermid©Orthopride
Euro. Surv. Antimicrob. Consumption Nat. Surv. Septicemia in Hosp. Qermid©Pacemakers
Nat. Surv. Surgical Site Infect. Quality Indicators Healthcare Associated Infect.
Sent. General Practitioners Shared Arthritis File for Electronic use
Sent. laboratories Infect. Dis. Surv. Creutzfeldt-Jakob dis. (Bel. Neurologists)
Sexually transmitted infect. (Sent. Surv.)
Surv. Clostridium difficile infect.
Surv. Infect. Dis. by Nat. ref. centre humane
microbiology
Redesign of data collections by healthdata.be
Legend
Registration started
Ready for launch
In test
Re-use of existing data
Being merged

Type of data provider Target deadline
All General and academic hospitals 06/2016
All Medical Laboratories 12/2016
All Psychiatric hospitals 06/2017
All General Practitioners 12/2017
Technical onboarding : Targets
As published in the Evaluation Action Plan eHealth 2013-2018:
Revision Action Point 18: “Inventory & Consolidation of Registries
Official proclamation dd. 14.10.2015 by IMC public health

Technical vs thematic onboarding
2
Technical onboarding:
• Once for each hospital
• Can be re-used by related labs
• People involved: IT + Healthdata
Thematic onboarding:
• Once for every registry at every hospital
• People involved: Data provider (IT, Medical, Admin)
+ project owners (lead) + HD (support)
HD4DP
Reg 1 Reg 2 Reg 3

3
• Can be re-used for related labs
HD4DP
Reg 1 Reg 2 Reg 3

HIS, LIMS, EPD, … of
data provider
HD4DP
eHBox client
software
eHBox
ETK –
encryption module
+
By 3rd party
OR Development
Cookbook
+
+
+
• Encryption module & file interface
• Cookbook available
• Short development process
Re-use of information by extracting structured info
from primary system and uploading in HD4DP
Goal is to evolve towards extracting all
necessary information from primary systems
and move away from manual data entry
(eHealth roadmap 2013-2018)
OR Development
Cookbook
Technical building blocks @ data provider
healthdata.be
data we care for
31

HD4DP
data provider
X-Connect eHBox
client software
eHBox
X-Connect ETK –
encryption module
+
+
+
+
ACTH
(RSW/FRATEM)
X-connect
data provider
eHBox client
software
eHBox
ETK –
encryption module
+
+
+
+
Medibridge,
HealthConnect
Medimail,UM,Hector
HD4DP
Integration in existing software (in progress)
healthdata.be
data we care for
HD4DP
KWS
NEXUZ eHBox
client software
eHBox
NEXUZ ETK –
encryption module
+
+
+
+
NEXUZ
Health

Technical onboarding
Nr Responsible Action
1 Hospital IT Appoint contact person
Prepare installation HD4DP
• Server machine
• Server connection
• User management
• Connection to national registry
• Connection to eHealthBox
 Summarized in installation sheet
2a Healthdata.be Install HD4DP
2b Hospital IT Install encryption module
3 Healthdata.be • Configure HD4DP & submit test registration
• Confirm successful installation & configuration

1 Hospital IT Prepare installation HD4DP
2a Healthdata.be Install HD4DP
• Once installation sheet is filled and sent to
healthdata@wiv-isp.be, we will contact you and
schedule a date for the installation
• We ask you to have someone standby during the
installation in case of problems
2b Hospital IT Install encryption module

2 Healthdata.be Install HD4DP
2b Hospital IT Install encryption module (EM) by either
• Buying the EM from your eHBox client vendor
• Implementing the EM according to the cookbook

2 Healthdata.be Install HD4DP
3 Hospital IT Install encryption module
4 Healthdata.be Configure HD4DP & submit test registration
• Healthdata will configure HD4DP so that it can
communicate with the encryption module
Confirm successful installation & configuration
• Healthdata.be will contact you to confirm the
successful reception of the test record(s).

3
• Can be re-used by related labs
HD4DP
Reg 1 Reg 2 Reg 3

Thematic Onboarding
1 Healthdata.be • Communicate registry content to allow pre-filling
2 Hospital IT • Analyze pre-fill possibilities
• Implement pre-fill
• upload stable data in HD4DP (if applicable)
• Define HD4DP users
• Communicate URL HD4DP to registrating personnel
3 Hospital
Clinicians &
Researcher
• Provide training to registrating personnel
• Start registration

Prefill from EPD/LIMS:
how to identify which info can be re-used
More info on support.healthdata.be
http://support.healthdata.be/customer
/portal/articles/1920824-re-use-data-
from-your-primary-systems
On www.healthdata.be/dcd, you can find the technical specifications of
the information required for IQEDFoot-registration:

Thematic Onboarding
1 Healthdata.be • Communicate register content to allow pre-filling
• Send stable data (if applicable)
2 Hospital IT • Analyze pre-fill possibilities
• Implement pre-fill
• Define HD4DP users
• Communicate URL HD4DP to registrating personnel
3 Hospital
Clinicians &
Researcher
• Provide training to registrating personnel
• Start registration

Manual Effort
TechnicalComplexity
HD4DP User
Interface
HD4DP CSV
Upload/Downl
oad
HD4DP CSV file
poller
HD4DP API
Currently Available in HD4DP
Ongoing Improvements
AS OF Q4 2016
Pre-fill options
E2E API
To be scheduled

CSV Upload / File Poller
• Data that is available in the primary system can be injected in
HD4DP
- Manual upload via User Interface OR
- Automatic integration through file polling
- NOT all fields need to be completed to provide significant
reduction of manual work!
• Documentation:
- Re-use data from your Primary Systems:
http://support.healthdata.be/customer/portal/articles/1920824
-re-use-data-from-your-primary-systems
- Detailed information on the CSV field formats and naming
conventions: http://www.healthdata.be/dcd/#/home
healthdata.be
data we care for

Timing for IQED
1. By June 30: installation HD4DP at all dataproviders
2. By August 31: creation user accounts
3. September: infosessions for end-users
4

Summary
 1 technical implementation for all registries;
 1 information architecture for all registries;
 1 service provider for all registries;
 1 set of business processes for all registries;
 Max. re-use existing data (“only 1ce” registration);
 Each DP can develop own strategy and priorities re. deep
integration and API’s;
 Each DP has the original set of submitted data in structured
and coded (inter) national format, in 1 local database;
 Each DP 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

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

healthdata.be
data we care for
visual attention
auditory attention
somatosensory attention
Thank you for your attention!
Anderson, J. et al. “Topographic Maps of Multisensory Attention.”
PNAS 107.46 (2010): 20110–20114. PMC. Web. 31 Dec. 2014.
Johan van Bussel,
on behalf of the healthdata team

Infosession for IQED dataproviders (14-22.04.2016)

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