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The healthdata.be project: Minimalisation of registration burden, Maximalisation of Return On Information Hasselt, 30.11.2015

Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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Page 1: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

The healthdata.be project:Minimalisation of registration burden, Maximalisation of Return On Information

Hasselt, 30.11.2015

Page 2: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

2

60min.

Page 3: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

healthdata.bedata we care for

Page 4: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Unknown effectiveness

Likely to be ineffective or harmful (3%)Unlikely to be beneficial (6%)

Trade-off between benefits and harms (7%)

Likely to be beneficial (24%)

Beneficial (11%)

BMJ Clinical Evidence (2014)

Clinical registries are necessary !

50%Effectiveness of 3000 common therapeutic

interventions

Plan

Check

Act

Do

Page 5: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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

healthdata.bedata we care for

Page 6: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

6

BUT? ? ?? ? ??! ? ?

healthdata.bedata we care for

Page 7: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

healthdata.bedata we care for

Collection of health (care) related data in Belgium (n > 160 projects): “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

Page 8: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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) and Flemish (23.07.2014) 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.

Version 2.0 of Action plan eHealth 2013-2018:;

Growing Awareness

Page 9: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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

Page 10: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Experiment

healthdata.be within the empirical cycle

Observation

Research Question

Theory Development

Conclusion(s)

Analysis

healthdata.bedata we care for

Page 11: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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

Page 12: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

healthdata.bedata we care for

Obtain standardization in way actors interact for certain process

Simplify interaction between various actors by adhering to ‘only once’ principle and maximally integrating with existing workflows

Ensure compliance to various governance rules and regulations

Create transparency and awareness for stakeholders about various processes and status of on-going processes

Support continuity of register management (e.g. in case of staffing changes)

Business Processes

Page 13: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis
Page 14: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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 souce 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

Page 15: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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)

Page 16: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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

Page 17: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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)

Page 18: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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

Page 19: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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)

Page 20: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Feedback flow

Resubmission (through the standard data transfer flow)

No impact on eHealth, existing services are used

eHealthBox with DECodage

Legend

Metadata (timestamp, type of data, …)Feedback

Field to correct

Identifiers (SSIN, RIZIV, transaction ID, ..)

Personal Data (medical or other)

CSV CSVCSV

CSV

CSV

CSV

CSV

Researcher

HD4RESHD4DP

Verify data and feedback to data provider (HD4RES)

Page 21: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Re-use of data in primary systems:CSV-upload functionality to upload data that is extracted from primary systems (e.g. EPD, LIMS).

CSV upload improvements:Various improvements of the prefill functionality via CSV-upload, including supporting the upload of different CSV's for one record & support repeated upload of the same CSV.

Integration with primary systems:Allow users to open a prefilled healthdata form in their primary systems (e.g. EPD, LIMS).

Built-in validation:Inter- and intrafield validations are performed while the form is being filled out.

Application integration:HIMS and LIMS can send the data through a standards based programmatic interface (API)

Registry PM self-service:Allow registry PMs to maintain their own data collection definitions & reference lists

Correction request handling:Registry PM can annotate records and send them back to the data providers for review.

Origin of data:Indicate for each record which data was prefilled, manually provided or manually modified after initial prefilling.

CURRENT VERSION 1.3.0. – 1.4.0. (dec2015)

Process reporting:Display metrics about the data collection process (e.g. # corrections, process time, # sessions, …)

Desktop version of HD4DP:Allow HD4DP to be installed on a desktop instead of a local server. Necessary for use by general practitioners.

Improved search functionality:Allow registry PMs to more easily search their records

PDF/Print View:Provide a printer-friendly version of the data collection form to support data collection on paper

Bulk request corrections:Allow the registry PM to select multiple records for correction with one action

Email notifications:Allow the registry PM to send email reminders to data providers

Images in forms:Allow data providers to indicate specific locations/zones on an image

Pseudonimization via eHealth:The eHealth-platform acts as Trusted Third Party to pseudonimize patient identifiers before they are sent to healthdata.

Secure data transfer:Data is transferred between data providers and healthdata via the secure eHealthBox channel

HD4DP – for data providersHD4RES – for researchers

Legend:

healthdata.bedata we care for

Development Roadmap HD4DP* & HD4RES

Multi-center HD4DP:Allow one HD4DP-installation to be used by different organisations

PLANNED DEVELOPMENT

*4 planned major releases of HD4DP each year

Page 22: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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)

Page 23: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Secure: strict user & access management (Only HD staff);

Privacy: “register” 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

Page 24: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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)

Page 25: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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

Page 26: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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Healthstat.be (website; live 12/2015) 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

Page 27: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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

Page 28: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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

Page 29: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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

Page 30: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Example Clinical Building block: “breathing”

healthdata.bedata we care for

Values: SNOMED-CT

Page 31: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

N=80

N=14

Building blockNo building block

N=16

15

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

Exploratory exercise use of Clinical Building Blocks (CBB’s) in a real registry

healthdata.bedata we care for

Page 32: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Exploratory exercise use of Clinical Building Blocks (CBB’s) in a real registry

healthdata.bedata we care for

Page 33: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

33

2014-2017: focus on redesign of 42 existing registers managed by WIV-ISP and RIZIV;

Examples: Rare diseases, HIV-AIDS, Diabetes, Influenza, Common childhood vaccine-preventable infectious diseases, Nosocomial infections, Medical devices (pacemakers, stents, hip & knee, …), Rheumatoid arthritis …

3 ‘Waves’: 2014-2015(Q2); 2015-2016(Q2); 2016-2017(Q) (see www.healthdata.be); Based on objective complexity criteria and policy priorities

Actualization of planning possible because of new priorities and urgencies. ==> NEW: Anatomic Pathologists towards Belgian Cancer Register

Planning

Page 34: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

2014 – 2015 (Q2) 2015-2016 (Q2) 2016-2017 (Q2)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

NEW >> Cancer Registry (anatomic pathology)

Redesign of data collections by healthdata.be

LegendRegistration startedReady for launchIn testRe-use of existing dataBeing merged

Page 35: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

HD Staff 2015

Jan-15 Feb-15 Mar-15

Apr-15 May-15

Jun-15 Jul-15 Aug-15

Sep-15 Okt-15 Nov-15

Dec-150

5

10

15

20

25

30

FTE = 15.28

N = 20

2 teams (“Data collection” & “Data warehousing”) with project leaders, business analyst, functional analysts, technical architects, developers, statisticians, test engineers, support officer, security officer, responsible MD

Page 36: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Alignment with Action plan eHealth 2013-2018; Define procedures and criteria for start of new registers

and the continuation of existing registers, with focus on

reduction of registration burden; Evaluation and prioritisation new proposed projects; Follow-up of Small Cell Risk Analyses (Statistical Disclosure

Control); Service Level Objectives; Budget control.

HD SteerCo

Page 37: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Healthdata SteerCo: Composition

Chair, not entitled to vote: Chief civil servant (R De Ridder)

Members entitled to vote: 4 independent physicians (J Kips, P De Plaen, G De Moor, H Vanpottelbergh, P

Kelchtermans, P Vollemaere , H De Nutte, G Van Pottelbergh) 2 physician –scientists (P Cosyns , F Meunier, B Himpens, Y Englert) 2 physicians from health insurance institutions (P Berkein , M Callens) 3 experts medical informatics (E Bellon, A Vandenberghe, T Fiers) 2 repr. of patients (L De Bot, M Fierens, B Pirsoul, R Heijlen)

Members not entitled to vote: 1 repr. of NIDHI (N Marly, P Meeus) 1 repr. of FPS Health (C Decoster, I Mertens) 1 repr. of KCE (S Devriese) 1 repr. of eHealth-platform (F Robben, T Duvillier) 1 repr. of each regional and community government (E Hendrickx, H De Kind) Project leader healthdata (J van Bussel, J Kips)

healthdata.bedata we care for

For each effective member, there is 1 deputy memberhealthdata.bedata we care for

Page 38: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Data providers remain owner of their data, unless otherwise agreed upon in convention between Parties;

Requestor of Registry, or designated third party is owner of the ensemble of data in Registry, unless otherwise agreed upon in convention between Parties;

Re-use of data only if positive advise owner and Sectorial Committee Health

Included in Collaboration Agreement RIZIV-WIV

Ownership

Page 39: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

39

Onboarding to healthdata

Page 40: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Technical vs thematic onboarding

40

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

Page 41: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Technical vs thematic onboarding

41

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

Page 42: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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

Page 43: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Deployment HD4DP in Belgian general and academic hospitals

2015week46

: HD4DP installed: To-do

Page 44: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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

44

Page 45: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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

Page 46: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Technical onboarding

Nr Responsible Action

1 Hospital IT Prepare installation HD4DP• Server machine• Server connection• User management• Connection to national registry• Connection to eHealthBox Summarized in installation sheet

2 Healthdata.be Install & configure HD4DP

3 Hospital IT Install encryption module Submit test registration

4 Healthdata.be Confirm successful installation & configuration

Technical onboarding

Page 47: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Nr Responsible Action

1 Hospital IT Prepare installation HD4DP

2 Healthdata.be Install & configure HD4DP• Once installation sheet is filled and sent to

[email protected], 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

3 Hospital IT Install encryption moduleSubmit test register

4 Healthdata.be Confirm successful installation & configuration

Technical onboarding

Page 48: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Technical onboarding

Nr Responsible Action

1 Hospital IT Prepare installation HD4DP

2 Healthdata.be Install & configure HD4DP

3 Hospital IT Install encryption module (EM) by either• Buying the EM from your eHBox client vendor• Implementing the EM according to the cookbook

Submit test registration• To test the correct installation & configuration of

HD4DP, you will be asked to submit at least one record of a test register.

4 Healthdata.be Confirm successful installation & configuration

Technical onboarding

Page 49: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Technical onboarding

Nr Responsible Action

1 Hospital IT Prepare installation HD4DP

2 Healthdata.be Install & configure HD4DP

3 Hospital IT Install encryption module

Submit test registration• To test the correct installation & configuration of

HD4DP, you will be asked to submit at least one record of a test registration.

4 Healthdata.be Confirm successful installation & configuration• Healthdata.be will contact you to confirm the

successful reception of the test record(s).

Technical onboarding

Page 50: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Technical vs thematic onboarding

50

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

Page 51: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Thematic OnboardingNr Responsible Action

1 Healthdata.be • Communicate registry content to allow pre-filling• Send stable data (if applicable)

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

Page 52: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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:

Page 53: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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• 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

Page 54: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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• 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

Page 55: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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 2016

Pre-fill options E2E API

To be scheduled

Page 56: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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

Page 57: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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

Page 58: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

Q&[email protected]

www.healthdata.be

healthdata be

@healthdatabe

Page 59: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

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

Page 60: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

HD4Patients: web portal supporting patient participation in registries (Patient Reported Outcomes & Patient Reported Experiences);

HD4Security_Officers: web application based on API of IBM Gardium to provide external security officers access to logging on DWH;

HD4ALL: web application based on API of IBM Gardium to provide all Belgian citizens following information: Is there data about me in a Registry? Who submitted my data? Who used my data?;

HD4NGS: generic architecture to collect, store, and make available for scientific analysis of human Next Generation Sequencing Data.

What’s next?

Page 61: Presentation project healthdata.be for hospitals in Limburg (dd. 2015.11.30.) @ Jessa Ziekenhuis

“Future pact for the patient with the pharmaceutical industry” (2015)

Royal Decree 12 may 2014 “Unmet Medical Need”

=> HD Services: Re-use of data available at datawarehouse: Private enterprises can

request access to data already available at DWH, if approval by Registry holder, steering committee HD and sectorial committee health.

Start new data collection project: Private enterprises can submit to governmental body/institute a motivated proposal (cfr. Unmet Medical Need) for implementation of new data collection. If accepted, governmental body/institute acts as commissioner towards healthdata.be. The enterprise becomes Registry holder and finances the project.

HD4Industry