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

http://www.plan-egezondheid.be/

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

healthdata.bedata we care for

Structure

• Presentation of healthdata services

• Current status & Planning

• Onboarding

• Questions




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

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 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


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

https://drive.google.com/open?id=0B0aqGf2hADXxcjk0OUZSdXdWVGc&authuser=0

https://drive.google.com/open?id=0B0aqGf2hADXxZHhkd0d6OHd5Mkk&authuser=0


Data Validation


Request


in Primary System


HEALTHSTATHD4DP

Analysis




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

LegendIdentifiers (SSIN, RIZIV, …)Metadata (internal ID, type data, …)Medical data

CSV

24/7

HD4DP

and / or

HD4DP : Healthdata for Data Providers


• 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


Data Validation


Request


in Primary System


HEALTHSTATHD4DP

Analysis




healthdata.be

Data Captation

Data Monitoring




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


Secure transfer of data and encoding of identifiers


Data Validation


Request


in Primary System


HEALTHSTATHD4DP

Analysis




healthdata.be

Data Captation

Data Monitoring





Data Validation


Request


in Primary System


HEALTHSTATHD4DP

Analysis




healthdata.be

Data Captation

Data Monitoring




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


Data Validation


Request


in Primary System


HEALTHSTATHD4DP

Analysis




healthdata.be

Data Captation

Data Monitoring




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


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


Example Clinical Building block: “breathing”


Values: SNOMED-CT

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


Use of Clinical Building Blocks (CBB’s) in a real registry

Use of Clinical Building Blocks (CBB’s) in a real registry



Structure

• Presentation of healthdata services

• Current status & Planning

• Onboarding

• Questions


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

28

Onboarding to healthdata

Technical vs thematic onboarding

29

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


30

Technical onboarding:• Once for each hospital• Can be re-used for related labs• People involved: IT + Healthdata



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


31

HD4DP


X-Connect eHBox client software

eHBox

X-Connect ETK – encryption module

+

+

+

+

ACTH (RSW/FRATEM)

X-co

nnec

t


eHBox client software

eHBox

ETK – encryption module

+

+

+

+

Medibridge, HealthConnect

Med

imai

l, U

M, H

ecto

r

HD4DP

Integration in existing software (in progress)


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



1 Hospital IT Prepare installation HD4DP

2a Healthdata.be Install 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

2b Hospital IT Install encryption module



mailto:[email protected]




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



http://support.healthdata.be/customer/en/portal/articles/1900558-encryption-module




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).



37

Technical onboarding:• Once for each hospital• Can be re-used by related labs• People involved: IT + Healthdata



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:

http://support.healthdata.be/customer/portal/articles/1920824-re-use-data-from-your-primary-systems



http://www.healthdata.be/dcd

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:


- Detailed information on the CSV field formats and naming conventions: http://www.healthdata.be/dcd/#/home




http://www.healthdata.be/dcd/#/home

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&[email protected]

www.healthdata.be

healthdata be

@healthdatabe


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