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Norwegian Health Analysis Platform
(HAP) – better opportunities for
secondary use of health data
Nordic RWE meeting, 26 September 2017
Christian Jonasson, Ph.D.
Senior Researcher
HUNT Research Center
K. G. Jebsen Center for Genetic Epidemiology
Norwegian University of Science and Technology (NTNU)
Norway: Strong political drive for better quality and faster
access to health data
• H021 – the government’s strategy for
R&I in the health and welfare sector
• The strategy has 10 priority areas
– Better use and easier access to health
data
– Promote public-private partnerships
and build a stronger life-science
industry
• Parlamentary resolution (May 2016): «The
Parlament asks the Government to report on
models and infrastructures that can facilitate
a safe and ethical collaboration between
Norwegian public biobanks, health data
resources and the life science industry»
Many ongoing projects/processes and dependencies
3
«One inhabitant –one EMR»
&
Helseplattformen
Committee for thestatistics law
The Health Data Committee
The General Data Protection Regulation
(GDPR)
International collaboration, new
standards and coding systems
EU-infrastructures
Parlamentarywhite paper onthe life science
industry
E-health
portefolio
Modernisedpopulation
register
Research infrastructures
Statistics Norway’smodernization
program
Welfaretechnologyprogram
Government issued expert report:
The Health Data Committee (HDU) report1. No need for Ethics Committee and Data
Inspectorate approval for access to secondary health data for research use
2. Establish a national service, and a common gateway, that handle all the administrative functions that make secondary health data accessible for all legitimate usages
3. A Health Analysis Platform is implemented quickly and expanded over time with additional health data sources and better analytical tools while maintaining and improving both data quality and data privacy
4. Make individual level socio-demographic data from Statistics Norway available on the Health Data Analysis Platform
June 2017
The Program of Healthdata
NUFA September 2017
Agenda
Side 6
The Program of Healthdata
Conceptual study for the Health Analysis Platform
Problem description and requirements analysis
Example
Six strategic focus areas in the national eHealth strategy 2017 – 2022
Side 7
Digitalization of
work processes
Better connection for
the patient progress
Critical ICT-
infrastructures and
common building
blocks
Better use of
health dataNew ways of
health care
National eHealth
management and
an increased
implementation
Customized regulations and common interpretation§
National technical common services and infrastructure
Standardized health data
Knowledge based health services and correct use of resources Involve citizens and strengthening the roll of the patient
Improved public health
Easier reporting of health data and access to health data
More innovation
Improved data security
Effects
Society objectives
ResultsAdministrational services for health data and research
Technical interoperability (API)
Improved administration of the registers
Improved quality of data
The Program of Healthdata – Objectives
More and improved health research
8
The Program of Healthdata consists of three projects
9
Study and implement: Standards, common coding, terminology, protocols, formats, channels, APIs
)
The Health Analysis Platform
Project
Standardization
Project
Common
Services
Project
The Health
Analysis Platform
Technical common
services for health
registers
§
Health registers(+ other sources of data)
Stakeholders
Organization
10
Program management
Board of the program
Standardization
Reference group
Program owner
External venders External venders External venders
Leader: Christine Bergland
Bodil Rabben
Alexander Gray
Program office
Owner: Alfhild Stokke
Leader: Håvard Lande
Common Services
Owner: Fredrik Glorvigen
Leader: Anders Långberg
The Health Analysis
PlatformOwner: Stein Tore Rasmussen
Leader: Bent Are Melsom
• Direktoratet for e-helse
• Folkehelseinstituttet
• Norges forskningsråd
• Norsk Helsenett
• Helsedirektoratet
• SSB
• NHO - Abelia
• Representanter RHF
• KS og Bærum kommune
• NTNU og HiOA
• Kreftforeningen
• Observatører: HOD, KD
Board of the program
• Direktoratet for e-helse
• Norges forskningsråd
• Folkehelseinstituttet
• Helsedirektoratet
• SSB
• RHF-ene
• Kreftregisteret
• Universitetet i Oslo
• Universitetet i Bergen
• Universitetet i Tromsø
• NTNU
• Norsk Helsenett
• Legeforeningen
• Sykepleierforbundet
• SKDE
• NSD
• NEM
• Uninett
• Bergen kommune
• Observatører: Datatilsynet, HOD,
KD
Reference group
Common working parties
«Administration of the
registers»
«Research»«Security and personal
protection»
«Health personnel»
«Governing and
economics»
«Innovation and
industry»
NEHS
NUIT
NUFA
Marianne Braaten
Agenda
Side 11
The Program of Healthdata
Conceptual study for the Health Analysis Platform
Problem description and requirements analysis
Example
Problem
description
Needs
assessment
The conceptual study for The Health Analysis Platform (HAP) follows the assessment instructions
Scope of
opportunity
Normative
requireme
nts
Evaluation
criteriaAnalyses of
socio-
economical
effects
K1
K2
K3
K4
K5
K6
K4
K5
K2
K5
K4
K0
Actions
Do nothing (K0)
12
Agenda
Side 13
The Program of Healthdata
Conceptual study for the Health Analysis Platform
Problem description and requirements analysis
Example
According to some surveys, Norway is the world leader in collecting and managing health data for quality purposes. However, we do lack the technical and operational solutions to use the data
Side 14
Source: OECD, HCQI Survey of Electronic Health Record
System Development and Use, 2016
Data governance
readiness
Technical and operational
readiness
DÅRForsvarets
helse
-register
GenetiskMU nyfødte
Helsearkiv-registeret
Kreft-registeret
MFR MSISNOISNPR IPLOSAbort
-registeretResept
-registeretNORM RAVN HKRSYSVAK
Health data sources in Norway
CPRNBrystkreft
–reg.
Prostata
kreftreg.
KOLS
–reg.NorKog
Norskhjertestans
–reg.SOReg-N
GastronetDøv
–blindhet–reg.
NKR LTMVDiabetes
–reg. for voksne
Norskhjertesvikt
–reg.HIV
NNRR
NNK
NRA
Muskel
–reg.
Nasjonaltbarnehofte
-reg.
Føflekkref
t–reg.
SmerteReg NRL NGERNorsk
intensiv–reg.
LKG
–reg.
Hoftebrudd–reg.
Gynkreft
–reg.
Tykk- ogendetarms–kreftreg.
ROASNorsk
hjerneslag–reg.
NORKARTonsille
–reg.
NNR
Norsk
pacemaker og ICD-
reg.
NoRGast
NORIC
Korsbånd
–reg.Lungekreft
–reg.BDR
Nasjonalt
traume–reg.
Norskhjerte
–infarktreg. NorArtritt NKIR
NBKRLymfom
–reg.ABLA NOR HISREG
Norsk
hjerte–
kirurgireg.
NorSpisMS
–reg.
Norsk
Parkinson-reg. og
biobank
Norsk
porfyri–reg.
Norscir
NorVas
Patientjournals
Central healthregisters
National medical quality registers
Other medical quality registers
Biobanks
Other
≈150 stk
≈277 stk
Pasientjournal[Etc.]
Pasientjournal[Etc.]
Pasientjournal: Tannlege
Pasientjournal: Lege
Pasientjournal[Etc.]
Pasientjournal[Etc.]
Pasientjournal[Etc.]
Pasientjournal[Etc.]
Pasientjournal[Etc.]
Pasientjournal[Etc.]
Pasientjournal[Etc.]
Pasientjournal: Tannlege
Pasientjournal: Lege
Pasientjournal[Etc.]
Pasientjournal[Etc.]
Pasientjournal[Etc.]
Pasientjournal[Etc.]
Pasientjournal[Etc.]
PasientjournalAvtalespesialist
PasientjournalHelseforetak
Pasientjournal: Tannlege
Pasientjournal: Fastlege
Pasientjournal…
Pasientjournal…
PasientjournalDPS / BUP
PasientjournalKlinikk
Pasientjournal….
RESH
FLR
HPR
Basic data
HTK
LSR
PREG
AR
KODE REG
BED REG
Family
Marital status
Income
Socioeconomically data
Record
Tac
Education
Social security
Tromsø-undersøkelsen
Public health studies
Kvinner ogKreft
SAMINOR HUNTHomocysteinun
d og HUSK
TROFINN OPPHED Oslo I-IIHUBRO/
innv. HUBROMoRo
CONOR MoBaReg. helse
-undersøkelserLand register …
Some selected needs (1)
16
Researchers
• A common service for sending
applications and receiving
access to health data
• A national catalog containing
variables, definition of variables
and metadata used in the health
registers
• Services that facilitate
international research
collaboration related to major
research projects
Government
• Improved decision support in the
health sector
• Improved opportunity to study
separate parts of local health
services and the specialized
health services
• Improved access to real time
data
Health personnel
• Reduced double registration of
personal information in several
separate registers
• More user friendly solutions for
reporting health information to
the registers
• Fast feed-back on the data
reported to the registers
Some selected needs (2)
17
Citizens
• Less scattering of personal
health information
• Improved access to personal
health information and a better
opportunity to detect an correct
errors, and if necessary provide
relevant additional information
• The opportunity to interact with
researchers and provide and
withdraw approval
Industry
• Easier access to public health
data for private industry
• Increased focus on innovation
and collaboration with the
industry
• Access to real time data when
testing a new service or product
Administrators of the registers
• A service for secure exchange of
data between the administrators
• Common proceedings for the
registers that are included in the
service
• Common and up-to-date-
sources for the basic data
Agenda
Side 18
The Program of Healthdata
Conceptual study for the Health Analysis Platform
Problem description and requirements analysis
Example
The Health Analysis Platform
Portal for researchers (helseanalyse.no)
What can researchers expect from The Health Analysis Platform?
19
Get an overview
(feasibility)
Receive guidance
Applications in one place
Receive access to
data
Interact with citizens
Perform analyses
Health registers, basic data, sensors, citizens and other sources
Administration of access, anonymization, aggregation, masking, transition, tracking, logging
Gathering, receiving, validation and transformation
Health leadersHealth personnel CitizensResearchers Government Industry
Govern
ing a
nd
adm
inis
tration
Analyses
Storing of data
Gathering, receiving and integration of data
Overview of data and coding system
Reporting and accessible data
Portal for analyses(www.helseanalyse.no)
Application support and proceedings
Data
securi
ty a
nd p
rivacy
pro
tection
National and international cooperation
Health registers, basic data, sensors, citizens and other sources
20
Vision for the architecture: The Health Analysis Platform
Step-wise value creation – demands a concept that can be used while developed
