The Norwegian Health Data Strategy an opportunity for sustainable healthcare and for research and development of new solutions

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1 The Norwegian Health Data Strategy an opportunity for sustainable healthcare and for research and development of new solutions 3rd Nordic conference on Real World Data Monica Larsen

2 Power of Genomics and Personalised Medicine Delivering better treatments to patients Delivering benefits to healthcare systems and society More efficient development of new medicines.

3 Delivering better treatments to patients Improved efficacy Improvements in overall survival Reduced adverse events

4 Delivering benefits to healthcare systems and society Focusing on prevention and prediction of disease Improving the management of diseases Preventing or delaying more expensive care costs and allowing scarce healthcare resources to be used most efficiently

5 More efficient development of new medicines More effective clinical trials More efficient clinical trials and reduction of R&D costs More ethical trials

6 Health Economic Outcome Research becomes more important Small studies Combination therapy Surrogate endpoints Health economic models need support from RWE

7 Health data in drug development Target ID Target Val Hit Lead Lead Optim Preclinic Phase I Phase II Phase III BoD HE Safety Effective ness. Research Discovery Development Real World Evidence Identification of drug target by genomics Understanding the biology of illness Translational research Identifing Biomarkers Development of diagnostics Register based RCT Subgroups stratified populations RWE health economy RWE - prevalence RWE burden of disease RWE - pharmacovigilance RWE efficiency

8 Norway is comparatively efficient at collecting health data, but less adept at using it than our neighbors Data governance readiness Technical and operational readiness Source: OECD, HCQI Survey of Electronic Health Record System Development and Use, 2016 Side 8

9 Health data sources in Norway Patient journals : : Lege GP Lege : : Tannlege Dentist Tannlege [Etc.] Public hospitals [Etc.] Commercial [Etc.] [Etc.] specialist [Etc.] Clinic [Etc.] [Etc.] Pscychiatric [Etc.] [Etc.] [Etc.]. [Etc.] [Etc.]. [Etc.] [Etc.] Central health registers MFR Genetisk MU nyfødte NPR Helsearkivregisteret Resept -registeret Forsvarets Abort NORM RAVN SYSVAK helse NOIS MSIS HKR -registeret -register Kreft -registeret IPLOS DÅR CPRN Brystkreft Prostata kreftreg. KOLS NorKog Norsk hjertestans SOReg-N NNRR NRA Hoftebrudd Gynkreft Tykk- og endetarms kreftreg. ROAS Norsk hjerneslag NORKAR Tonsille Norsk pacemaker og ICDreg. NORIC National medical quality registers Gastronet Nasjonalt barnehofte -reg. Døv blindhet Føflekkreft NKR LTMV Diabetes for voksne SmerteReg NRL NGER Norsk hjertesvikt Norsk intensiv HIV LKG NNK NNR Muskel NoRGast Korsbånd NBKR Lungekreft Lymfom BDR ABLA NOR Nasjonalt traume HISREG Norsk hjerte infarktreg. Norsk hjerte kirurgireg. NorArtritt NorSpis NKIR MS Norsk Parkinson -reg. og biobank Norsk porfyri Norscir NorVas Other medical quality registers Hundreds 361 Biobanks Basic data Socioeconomic data Public health studies Personell Population Companies Income Tax Social security Tromsø -undersøkelsen Kvinner og Kreft SAMINOR HUNT Homocysteinun d og HUSK GPs Doctors Codes Marital status Justice Education TROFINN OPPHED Oslo I-II HUBRO/ innv. HUBRO MoRo Other Org. structure Health services Electronic address Family Land register CONOR MoBa Reg. helse -undersøkelser

10 The Health Data Program (HDP) Mission Improved public health Knowledge-based health services and efficient use of resources Empowered and involved citizens More and improved health research More innovation and business development Efficient health registry management and operation Goals & Objectives Efficient reporting and access to health data Improved data protection Improved data quality Administrative services for health data and research Results Improved legal framework Semantic interoperability Technical interoperability (API) Common technical services and national infrastructure

11 The Health Data Program: 3 projects Project: Health analysis platform Health Analysis Platform Help to investigate and introduce; standards, codecs, terminologies, protocols, formats, channels, services (APIs) Project: Standardization Health registers (+ other datasources) Project: Common technical services Common technical services for health registries Side 11

12 Objective - Researchers: Efficient access to data and analytical capabilities It sometimes takes several years before I get access to the data I need! My research requires socioeconomic data I need detailed, connected data for precise results, not for snooping I need more advanced analytics technologies and visualization techniques I wish data was more harmonized and standardized I wish data was more harmonized and standardized

13 What can researchers expect from The Health Analysis Platform? The Health Analysis Platform Health research platform (helseanalyse.no) Receive guidance Get an overview Apply for data in one place Execute analysis Interact with citizens Gain access to data Identity and access administration, anonymization, aggregation, masking, tracking, logging Gathering, receiving, validation and transformation Health registers, basic data, sensors, citizens and other sources 13

14 DELIVERY TIME (MONTHS) From data distribution to self-service analysis? Average processing time for access to Norwegian health data months 17 seconds NUMBER OF DATA SOURCES

15 The Concept Study shows that the Analysis ecosystem is the best way to develop and introduce The Healthanalysisplatform Scientist Health personnel Authorities Business Helth leaders Permission manager Analysis services Application and case processing services Management services Data platform with privacy bu design Inhabitant services Inhabitants Register Managers Data sources Ekosystem Side 15

16 The Analysis ecosystem is introduced step by step Application supervisor Health Data Portal Case management The simple analysis room The exploratory analysis The simple ecosystem Advanced health analysis Analysis ecosystem Shall provide users with information on which health data sources are available and information on how to apply. Shall give users one place to search for health data, get information about variables and an electronic delivery service for health data. Shall standardize the case management process on giving access to health data and provide users with faster access through increased visibility and faster case processing. Shall provide users with access to a secure infrastructure to analyze health data and facilitate increased guidance in the application process. Shall provide users with exploratory analysis services and the ability to establish their own data warehouse solutions on the platform. Shall provide the user with a marketplace of analytical tools that provide flexibility and freedom of choice in the use of tools. Shall provide users with faster access to data through partially automated case processing and emergency preparedness and healthcare. Should give users access to a marketplace of analytics services and an ecosystem of data providers A) APPLICATIONS AND CASE MANAGEMENT SERVICES B) DATA AND ANALYSIS PLATFORM C) ANALYSIS ECOSYSTEM Side 16

17 Starting small, building step by step Side 17

18 API: Security and data protection API: Administration Health analysis platform Concept 7: Open architecture, ecosystem & autonomous analysis Public sector Research institutes Academic institutions Commercial entities Nordic collaborators & external infrastructure s Automatic agents Apps & addons Research modules Data access modules Data import modules API: Access, exploration and dialogue Closed / autonomous analysis Authorized analysis Open analysis and tools API: Analysis Health Analysis Platform (HAP) Processed, connected health data Non-sensitive data API: Data Health registers, basic data, sensors, citizens and other sources

19 Health data is an increasingly important resource - A unique opportunity for Norway Health data is an increasingly important part of the development of pharmaceuticals and health technology Health data is central in the development and implementation of personalized medicine Health data and accompanying analysis services contributes to making Norway competitive in an international research intensive industry LMI and the Cancer Registry has started a pilot

20 Thank you