Side 63, veikartet
vollset - health registries for research – university of bergen & norwegian institute of public health
slide 1
vollset - health registries for research – university of bergen & norwegian institute of public health
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3. august 2011
Problemstillinger:
- Narkolepsi ?
- Svangerskaps-komplikasjoner ?
vollset - health registries for research – university of bergen & norwegian institute of public health
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Reseptregisteret (NorPD)
Antiviral medikasjon
Statistisk sentralbyrå
Inntekt, utdannelse
Fødselsregisteret (MFR)
Fødselsutfall, sykdommer hos mor
REGFLU
MSIS
H1N1-status
Pasientregister
diagnoser
Folkeregisteret (DSF)
Basis for
kopling/sivilstand
SYSVAK
Vaksinasjon, dato
KOPLET DATAFIL
(hos koplingsinstans, for
eksempel SSB, MFR)
Personidentifiserbar (fnr)
FORSKNINGSFIL
uten person-id (fnr)
Potensielt stort antall
variabler, individer
Anonym (på forskerens hånd)
Avidentifisert
vollset - health registries for research – university of bergen & norwegian institute of public health
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HVORFOR REGISTRE ?
vollset - health registries for research – university of bergen & norwegian institute of public health
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Helseregistre gir anledning til å følge
pasienter over lang tid – viktig for
• Kunnskap og gode data om sykdom og
helseforhold
• om faktorer som gir dårlig helse / god helse
• til nytte for befolkning, pasienter, forvaltning
og forskning
• Skånsom forskningsmetode (for deltakernes
del)
vollset - health registries for research – university of bergen & norwegian institute of public health
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Norske artikler i New England
Journal of Medicine 1993-2010
• Søk i Pub Med: norway[Affiliation] AND n-engl-j-med[Journal]
• 20 treff 1993-2010 (1 er senere «retracted», 1 er «sounding
board» uten humane data)
• 18 original-artikler gjenstår
– 1 er en observasjonsstudie av hepatitt C infeksjon blant pasienter som fikk
immunglobuliner, 1 er en studie av assay for troponin T i et materiale fra en randomisert
studie blant hjertekar-pasienter, 1 er en randomisert studie med n-3 fettsyrer til
psoriasis-pasienter
– 5 er randomiserte studier blant hjertekar-pasienter
– 10 av 18 artikler er basert på Medisinsk fødselsregister,
Kreftregisteret, Dødsårsaksregisteret eller koplinger til
disse registrene for utfallsmål
vollset - health registries for research – university of bergen & norwegian institute of public health
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Nordisk tradisjon
• «The Nordic model»
• De nordiske land er modell-samfunn for en
velferdsstat med relativt mindre ulikhet,
universell adgang til utdannelse,
helsetjenester og sosiale ytelser
• En mindre vektlagt særtrekk ved disse landene
er nasjonale, alle-omfattende helseregistre,
som det er tradisjon for (og f.eks. i Norge
lovhjemmel) kan benyttes til forskning
vollset - health registries for research – university of bergen & norwegian institute of public health
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Utvalgte nasjonale nordiske helseregistre‡
Register
Danmark
Finland
Norge
Sverige
Dødsårsaksregister
1943
1969
1951
1952
Medisinsk fødselsregister
1973
1987
1967
1973
Pasientregister (sykehusopphold)
1967
(1977*)
1969
2008
1964
(1987*)
Kreftregister
1943
1953
1952
1958
Reseptregister
1995
1994
2004
2005
‡ Elektronisk lagret personidentifiserbar (evt pseudonymisert) informasjon
* Landsdekkende fra året i parentes.
Fra Vollset & Cappelen. Registerepidemiologi. I Laake et al. Epidemiologiske og kliniske
Forskningsmetoder. Gyldendal Akademisk 2007 [korrigert i forhold til original tabell]
vollset - health registries for research – university of bergen & norwegian institute of public health
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Norwegian Research Council (NRC) Research infrastructure call - scientific databases and collections
Health Registries for Research
National infrastructure for health registries research – 208527/F50 revised august 2011
Partners and network: University of Bergen, Norwegian Institute of Public
Health, University of Tromsø, University of Science and Technology,
University of Oslo, Northern Regional Health Authority, Center for Clinical
Documentation and Evaluation (SKDE), Central Regional Health Authority,
Western Regional Health Authority, South-Eastern Regional Health
Authority, Norwegian Knowledge Centre for the Health Services,
Norwegian Patient Registry
vollset - univ. bergen -
norwegian research council 17 february 2012:
seminar on infrastructure for research data
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Biobanks, health registries, cohorts
• Health registries for research is one of the three pillars of a complete national
infrastructure for medical research
• Improved registry infrastructure essential for optimal utilization of Norwegian
population based health studies and biobanks
• The combination of clinical and population based biobanks, national health
registries and large population based cohorts provides a unique research
infrastructure internationally
vollset - univ. bergen -
norwegian research council 17 february 2012:
seminar on infrastructure for research data
slide 11
VISION
• Establish internationally competitive research
and research documentation service based on
Norwegian health registries
• Key elements of the new infrastructure are
timeliness, access, quality of data and
metadata, and linkage standards for national
health and clinical registries
vollset - univ. bergen -
norwegian research council 17 february 2012:
seminar on infrastructure for research data
slide 12
AIMS
• establish network for national health registries research
infrastructure (the 4 major universities, all regional health
authorities, Norwegian Institute of Public Health, Norwegian
Knowledge Center for the Health Services, Norwegian Patient
Registry participated in application)
• improved privacy protection and data security
• support for statistical analyses and design of registry-based
studies
• secure access for outside researchers (remote logon)
• improved quality of linkage between registries
• improved access to disease outcome data for health surveys and
biobanks
• improved management of family linkage information
• support for disease and occurrence mapping - GIS resources
vollset - univ. bergen -
norwegian research council 17 february 2012:
seminar on infrastructure for research data
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Why is the infrastructure 'Health
Registries for Research' necessary?
• Access to registry data for research is too complex and timeconsuming, and researchers spend their time on obtaining
data instead of analysing and publishing
• Responsibilities for health registries in Norway are shared
among several central institutions and are distributed
regionally. This is unfortunate for health research.
• Efficient utilisation of the combined resources for research
purposes requires coordination and networks for cooperation
and standardisation
• ‘Health Registries for Research’ will focus on the scientific use
and the needs of academic users of Norwegian health
registries
vollset - univ. bergen -
norwegian research council 17 february 2012:
seminar on infrastructure for research data
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National (central) health registries
Cause of Death Register
The Medical Birth Registry of Norway (MBRN)
Register for Pregnancy Terminations (Abortion)
Surveillance System for Communicable Diseases (MSIS)
The Tuberculosis Registry
The Childhood Vaccination Register (SYSVAK)
Surveillance System for Resistance against
Antibiotics in Microbes (NORM)
The Norwegian Surveillance System for Infections in Hospitals
(NOIS)
The Norwegian Prescription Database (NorPD)
The Norwegian Cardiovascular Disease Registry
The Cancer Registry of Norway
The Norwegian Patient Registry (NPR)
Start
year
1925/1951
1967
1979/2007
1977
1962
1998
2003
Responsible
institution
NIPH*
NIPH
NIPH
NIPH
NIPH
NIPH
NIPH
2005
NIPH
2004
2010
1952
NIPH
NIPH
S-E RHA **
1997/2007
Dir. Health
2005
Dir.Health
2008
2005
Dir. Health
Min. Defense
The Norwegian Information System for The Nursing and Care
Sector (IPLOS)
ePrescription Database
The Health Registry of the Armed Forces
*Norwegian Institute of Public Health ** Regional Health Authority
vollset - univ. bergen -
norwegian research council 17 february 2012:
seminar on infrastructure for research data
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National clinical registries (medical
quality registries)
South-Eastern Regional Health Authority
1. Child and juvenile diabetes
2. Neonatal medicine
3. Cerebral palsy
4. Trauma
5. Colorectal cancer
6. Prostate cancer
Western Regional Health Authority
1. Intensive care
2. Diabetes in adults
3. Cleft lip and palate
4. COPD (KOLS)
5. Arthroplasties
6. Hip fractures
7. Cruciate ligaments
8. Multiple sclerosis
Central Regional Health Authority
1. Myocardial infarction
2. Cerebral stroke
Northern Regional Health Authority
1. Back surgery
vollset - univ. bergen -
3. Vascular diseases/vascular surgery
2. Hereditary and congenital
neuromuscular diseases
norwegian research council 17 february 2012:
seminar on infrastructure for research data
slide 16
WP
Work packages
Preparing national (central) registry data
for research
2 Biostatistics support service
1
3
Data security implementation and support
service
4 National standard for registry data
documentation
5
6
7
Research support for coordination with quality registries for
cardiovascular disease
Coordination of utilization of data from the national medical
quality registers for research purposes
Utilization of national hospital discharge and quality of care data
8
Data from the Norwegian Patient Register
for research
9 Management and coordination
vollset - univ. bergen -
norwegian research council 17 february 2012:
Responsible
partners
NIPH -Bergen,
UoT
UoB , NIPH,
NHH, Uo0
UoB
UoT
NTNU/SKDE/
HM
SKDE
NOKC
NPR
UoB/NIPH
seminar on infrastructure for research data
slide 17
What the infrastructure is not
• Not computing intensive*
• Not storage intensive
• BUT requires safe environment for sensitive
data
• Possible collaboration with Global burden of
disease project – Ensemble modelling (bla
Bayesian model averaging – 600 timer på 5000
Gflops cluster)
Foreman et al. Pop Health Metrics 2012
vollset - univ. bergen -
norwegian research council 17 february 2012:
seminar on infrastructure for research data
slide 18
Key challenges
• Data security and privacy protection. Safe
storage, linkage, transport of data (encryption
systems)
• Standardisation and documentation of registries
and complex administrative systems across
institutions and regions - METADATA
• Improved support for study design and statistical
analysis
• Efficient linkage of registries and access to
research data (without personal identifiers) –
legal and regulatory issues
vollset - univ. bergen -
norwegian research council 17 february 2012:
seminar on infrastructure for research data
slide 19
Side 63, veikartet
vollset - health registries for research – university of bergen & norwegian institute of public health
slide 20