Regionernes nationale databasedag 8. april 2015

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1 PROCRIN Program for Clinical Research Infrastructure Supported by the Lundbeck Foundation and the Novo Nordisk Foundation Regionernes nationale databasedag 8. april 2015 Fremtidig forskningsstrategi for databaserne belyst ved PROCRIN v. Jørgen Jørgensen, programleder for PROCRIN

2 Program for Clinical Research Infrastructure Maj 2012 Lundbeckfondens initiativ Task force Erik Juhl Mikael Rørth Henrik Kehlet Niels Borregaard Birgitte Nauntofte Nina Espegård Hassel Anne Marie Engell Henrik Toft Sørensen 2

3 Baggrund for initiativet 1. Der er en klar sammenhæng mellem forskning og kvalitet i sundhedsvæsenet. 2. Eksisterende data anvendes ikke i samme omfang til klinisk forskning som til epidemiologisk forskning. 3. Det er vanskeligt for klinikere at få overblik over data. 3

4 Baggrund for initiativet 4. Det er vanskeligt for klinikere at få adgang til og få analyseret data til at besvare kliniske spørgsmål. 5. Der mangler centrale data i en række databaser for at de kan udnyttes optimalt i klinisk forskning. 6. Bedre kliniske data vil styrke mulighederne for de danske biobanker. 7. Der er kun begrænset forskningsaktivitet indenfor de kliniske kvalitetsdatabaser. 4

5 Baggrund for initiativet 8. Der er bekymring for datakvaliteten, specielt i Landspatientregisteret og udvalgte kliniske databaser. 9. Der anvendes ingen anerkendte definitioner af en række kliniske variable på tværs af registre og databaser. 10. Der er betydeligt potentiale for dansk klinisk forskning almen praksis databasen og de kliniske kvalitetsdatabaser dækker den kliniske hverdag. 11. Danmark er ved at blive hægtet af den internationale udvikling indenfor e-health. 5

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11 Program for Clinical Research Infrastructure 11

12 Mål og vision The overarching aim of PROCRIN is to bridge research and clinical practice. The program s ambitious vision is to support the long-term effort to ensure that all data related to a person throughout the entire health care system are collected systematically, undergo quality assurance, and are available for research and clinical purposes, while protecting the confidentiality of individuals. 12

13 From better data to improved health care 13

14 Projektgruppen 14

15 Organisation Per Okkels, departementschef (formand), SUM Peter Sloth, kontorchef, FIVU Erik Jylling, sundhedspolitisk direktør, DR Janus Laust Thomsen, direktør, DAK-E Peter Schwarz, formand, LVS Prof. Anders Ekbom, Karolinska Instituttet Prof. Liam Smeeth, LSHTM Prof. Clement McDonald, NIH XX, Danmark 15

16 PROCRINs delprogrammer PROCRIN består af 5 delprogrammer som sammen skal sikre: Data af høj kvalitet (Delprogram 1-3) Ekspertise (Delprogram 4) Innovation og kommunikation (Delprogram 5) 16

17 Delprogram 1 General practice research program Perform standardized documentation of existing data in the four clinical quality databases in general practice Develop an infrastructure that facilitates completion of prospective clinical research studies in general practice based on voluntariness from patients and GP s Perform documentation of the National Health Service Register regarding key health services provided by GPs Programleder: Mogens Vestergaard Daglig leder: Bodil Hammer-Bech 17

18 Delprogram 2 Clinical quality databases Creation of a data infrastructure containing information across all clinical quality databases, standardization of data, and development of guidelines for data collection. Programleder: Paul Bartels, Regionernes Kliniske Kvalitetsudviklingsprogram (RKKP) 18

19 Delprogram 3 National health registries Improvement of data completeness and data quality in the national health registries. Programleder: Poul Erik Hansen, SSI 19

20 Delprogram 4 Clinical consultancy function Establishment of a clinical consultancy function covering all Danish regions, providing Danish clinical investigators with an overview of all health data recorded for Danish patients. The consultancy function will assist with data access, study design, data collection, linkage of datasets from multiple registries, statistical analysis and reporting. The aim is to improve data access for individual researchers, hospitals, and universities. Programleder: Henrik Toft Sørensen 20

21 21 Torben Jørgensen Bente Nørgård, Mette Nørgaard Christian Torp-Pedersen Henrik Toft Sørensen (leder)

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23 Deadlines og milestones 23

24 Delprogram 5 PROCRIN scientific coordinating center Establishment of a PROCRIN scientific coordinating center to support the overall administration of the initiative, foster cooperation and interaction among researchers and stakeholders, provide research training and innovation, and promote Danish clinical research in national and international efforts, in collaboration with Innovation Centre Denmark a Division of the Ministry of Foreign Affairs supporting innovation and growth through partnerships with leading international academic institutions. Moreover, the PROCRIN scientific coordinating center will be responsible for construction and supervision of the datasets in Subprograms 1 and 2. The PROCRIN scientific coordinating center will develop methods for analyzing large datasets, allowing better definition of patient phenotypes using structured data (demographics, diagnoses, medications, and laboratory measurements), as well as using unstructured clinical text e.g. radiological reports and discharge summaries. Programleder: Henrik Toft Sørensen 24

25 Økonomi vedr. PROCRIN Bevilling fra Lundbeckfonden og Novo Nordisk Fonden i alt for perioden : 50 millioner kroner 25

26 Økonomi vedr. PROCRIN Bevilling fordelt på delbudgetter Delprogram 1, Praksisområdet Delprogram 2, Kliniske databaser Delprogram 3, Nationale sundhedsregistre Delprogram 4, Klinisk konsulentfunktion Delprogram 5, Videnskabeligt koordinationscenter 7,0 mio. kr. 6,6 mio. kr. 13,0 mio. kr. 11,3 mio. kr. 10,7 mio. kr. Bevillingen dækker ikke overhead til programmet. Der bidrages således med indirekte medfinansiering fra de involverede parter. 26

27 Fremtidig forskningsstrategi for databaserne med udgangspunkt i PROCRIN data fra kliniske kvalitetsdatabaser integreres med sundhedsdata fra andre kilder for at gøre en sådan integration meningsfuld skal der foretages begrebsafklaring og teknisk harmonisering - dvs standardisering strategien muliggør en bredere tilgang til forskningen end forskning baseret på enkelte datakilder PROCRIN investerer i forbedret validering af data PROCRIN investerer i uddannelse i databaseforskning og metodeudvikling PROCRIN s konsulentfunktion muliggør en udvidelse af kredsen af klinikere, der forsker PROCRIN arbejder på at smidiggøre forskernes adgang til sundhedsdata 27

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