Side 63, veikartet

1. Side 63, veikartet

3. 3. august 2011 • Problemstillinger: • Narkolepsi ? • Svangerskaps-komplikasjoner ?

4. Reseptregisteret (NorPD) Antiviral medikasjon MSIS H1N1-status Pasientregister diagnoser Folkeregisteret (DSF) Basis for kopling/sivilstand SYSVAK Vaksinasjon, dato Statistisk sentralbyrå Inntekt, utdannelse Fødselsregisteret (MFR) Fødselsutfall, sykdommer hos mor KOPLET DATAFIL (hos koplingsinstans, for eksempel SSB, MFR) Personidentifiserbar (fnr) REGFLU FORSKNINGSFIL uten person-id (fnr) Potensielt stort antall variabler, individer Anonym (på forskerens hånd) Avidentifisert

5. HVORFOR REGISTRE ? vollset - health registries for research – university of bergen & norwegian institute of public health slide 5

6. 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)

7. 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

8. 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

9. Utvalgte nasjonale nordiske helseregistre‡ Fra Vollset & Cappelen. Registerepidemiologi. I Laake et al. Epidemiologiske og kliniske Forskningsmetoder. Gyldendal Akademisk 2007 [korrigert i forhold til original tabell]

10. Norwegian Research Council (NRC) Research infrastructure call - scientific databases and collectionsHealth 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

11. 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

12. 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

13. 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

14. Why is the infrastructure 'Health Registries for Research' necessary? • Access to registry data for research is too complex and time-consuming, 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

18. 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

19. 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

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