Post on 14-Apr-2017
transcript
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.bedata we care for
Structure
• Presentation of healthdata services
• Current status & Planning
• Onboarding
• Questions
healthdata.bedata we care for
healthdata.bedata we care for
healthdata.bedata we care for
Collection of health (care) related data in Belgium (n > 160 projects): “AS-IS”
WIV & RIZIV
N = 42
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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.bedata 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-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)
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-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, …)Metadata (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
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)
ETK & E2E Encryption
eHealthBox with Codage
LegendIdentifiers (SSIN, RIZIV, transaction ID, ..)Metadata (timestamp, type data, …)Personal data (medical or other, possibly KMEHR based)
Coded IdentifiersEncrypted 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
CSVCSV
CSV
CSV
CSV
HD4RES
HD4DP
healthdata.bedata we care for
Secure transfer of data and encoding of identifiers
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)
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)
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 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)
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
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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.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 DClinical building blocks
healthdata.bedata we care for
Example Clinical Building block: “breathing”
healthdata.bedata we care for
Values: SNOMED-CT
N=80
N=14
Building blockNo building block
N=16
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14
14
8
32221111
be.en.hd.TransferProcedure be.en.hd.MedicationPrescriptionbe.en.hd.TransferConcern be.en.hd.TransferLaboratoryResultsbe.en.hd.Patient be.en.hd.Smokingbe.en.hd.Encounter be.en.hd.MedicalEquipmentbe.en.hd.BloodPressure be.en.hd.Caregiverbe.en.hd.CareProvider be.en.hd.BodyWeightbe.en.hd.BodyHeight
Potential use of Building Blocks in registry X
Type of Building Blocks that could be used in registry X
healthdata.bedata 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.bedata we care for
healthdata.bedata we care for
Structure
• Presentation of healthdata services
• Current status & Planning
• Onboarding
• Questions
healthdata.bedata we care for
Deployment HD4DP in Belgian general and academic hospitals
: HD4DP installed: To-do
Wave 1 Wave 2 Wave 3Bel. 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
NEW >> Cancer Registry (anatomic pathology)
Redesign of data collections by healthdata.be
LegendRegistration startedReady for launchIn testRe-use of existing dataBeing 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 RegistriesOfficial proclamation dd. 14.10.2015 by IMC public health
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Onboarding to healthdata
Technical vs thematic onboarding
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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
Technical vs thematic onboarding
30
Technical onboarding:• Once for each hospital• Can be re-used for 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
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.bedata we care for
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HD4DP
HIS, LIMS, EPD, … of data provider
X-Connect eHBox client software
eHBox
X-Connect ETK – encryption module
+
+
+
+
ACTH (RSW/FRATEM)
X-co
nnec
t
HIS, LIMS, EPD, … of data provider
eHBox client software
eHBox
ETK – encryption module
+
+
+
+
Medibridge, HealthConnect
Med
imai
l, U
M, H
ecto
r
HD4DP
Integration in existing software (in progress)
healthdata.bedata we care for
HD4DP
KWS
NEXUZ eHBox client software
eHBox
NEXUZ ETK – encryption module
+
+
+
+
NEXUZHealth
Technical onboarding
Nr Responsible Action
1 Hospital IT Appoint contact personPrepare 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
Technical onboarding
Nr Responsible Action
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
3 Healthdata.be • Configure HD4DP & submit test registration• Confirm successful installation & configuration
Technical onboarding
Technical onboarding
Nr Responsible Action
1 Hospital IT Prepare installation HD4DP
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
3 Healthdata.be • Configure HD4DP & submit test registration• Confirm successful installation & configuration
Technical onboarding
Technical onboarding
Nr Responsible Action
1 Hospital IT Prepare installation HD4DP
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).
Technical onboarding
Technical vs thematic onboarding
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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
Thematic OnboardingNr Responsible Action
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.behttp://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 OnboardingNr Responsible Action
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
personnel3 Hospital
Clinicians & Researcher
• Provide training to registrating personnel• Start registration
Manual Effort
Tech
nica
l Com
plex
ity
HD4DP User Interface
HD4DP CSV Upload/Downl
oad
HD4DP CSV file poller
HD4DP API
Currently Available in HD4DPOngoing 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.bedata 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
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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&Ahealthdata@wiv-isp.be
www.healthdata.be
healthdata be
@healthdatabe
healthdata.bedata we care for
visual attentionauditory attentionsomatosensory 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