The Swedish Life Science strategy Health Data

Transcription

1 The Swedish Life Science strategy Health Data 3RD NORDIC CONFERENCE ON REAL WORLD DATA COLLABORATION BETWEEN PHARMA INDUSTRY & ACADEMIA NOVEMBER , HELSINKI Anders Blanck, Director-General Swedish Association of the Pharmaceutical Industry

2 Office for Life Sciences Office for Life Sciences 2

3 Illustration: Itziar Casany Ramirez Roadmap Life Sciences - towards a national strategy Office for Life Sciences Departementsnamn 3

4 Mission Purpose Promote innovation, knowledge and quality development Improve investment conditions for life science companies in Sweden Task Coordinate policy development Set priorities Speed-up the work Develop a life science strategy for Sweden Organisation Jenni Nordborg, Director Ministry of Social Affairs, Ministry of Research and Higher Education, Ministry of Enterprise and Innovation Advisory Board Innovation Partnership Programme Office for Life Sciences 4

5 Strategic Advisory Board A Lönnberg O P Ottersen L Ljungqvist H Stensmyren M Wiberg A-S Lodin A Blanck A Henriksson A N Vindefjärd J Ekstrand C Bennet D Isaksson S Riggare G Ando H Lundgren L Liljedahl E Björk A L Sköldebrand H Dannetun Life science-kontoret 5

6 Illustration: Itziar Casany Ramirez Holistic and long-term perspective Systems transformation Knowledge and competence Patient / user co-creation Prevention health focus International attractiveness Next-generation strengths Office for Life Sciences 6

7 Illustration: Itziar Casany Ramirez 3priority areas Office for Life Sciences 7

8 Illustration: Itziar Casany Ramirez Efficient use of health data Office for Life Sciences 8

9 Analytic Imaging Diagnostics Arena, AIDA 9

10 Illustration: Itziar Casany Ramirez Precision medicine future diagnostics, therapy and cure Office for Life Sciences 10

11 Genomic Medicine Sweden To get the right diagnosis and to give the right treatment to the right patient

12 Illustration: Itziar Casany Ramirez Future care improved integration of innovation and R&D Office for Life Sciences 12

13 Lead patients / Spetspatienter Ministry of Enterprise and Innovation 13

14 Thank you! Office for Life Sciences 14

15 Working group Health Data

16 Life Science strategy = an opportunity to be more ambitious together Analysis of health data develops patient care, quality of healthcare & Life Science companies' products & services The speed of utilizing the potential of digitization must increase County councils and municipalities have the basic responsibility for the digitization of healthcare There are national services for the provision of information between healthcare providers but there is no single point of entry for access to health data for research purposes Sweden has most of needed resources in terms of registries, biobanks & research infrastructure, but national leadership needs to be improved A holistic leadership based on responsibility for research, infrastructure, business & citizens Legislative work & government assignments to clearly support use of health data A learning policy - where decisions & initiatives are adjusted iteratively is needed to meet the rapid digitization

17 Focus on the use of health data for research, development & follow-up A shift from knowledge management to knowledge generation in two steps with activities to achieve: Change in national governance A single point of entry to health data An effective regulatory framework for using health data Prerequisites for continuous analysis of health data

18 Demand for health data = a motor for ehealth development Life Science sector Knowledge Management in Healthcare Life Science Strategy Vision ehealth Knowledge Generation in Healthcare 2025

19 Success in the health data work is absolutely necessary for Swedish Life Science! In order to build a common story - how the use of health data shapes the future healthcare - it is proposed that the work proceeds based on: An ambitious & common goal An agreement between the Government, County Councils, Universities and the Life Science companies Follow-up on deliveries Ideas on the common goal: Knowledge generation as an integral part of healthcare Health data that follow the individual regardless of healthcare provider & region A possibility for citizens to donate their health data through a broad digital consent Risk / benefit assessment for the citizen as the basis for knowledge generation based on health data

20 Examples of activities A review of responsibilities and division of tasks between government agencies Activities to increase public knowledge on the importance of knowledge generation based on health data The development of registerforskning and RUT as the single point of entry & ax till limpa solution for health data access

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22 Examples of activities A review of responsibilities and division of tasks between government agencies Activities to increase public knowledge on the importance of knowledge generation based on health data The development of registerforskning and RUT as the single point of entry and ax till limpa solution for health data access A consolidation of all laws guiding use of health data & a national support function for legal interpretation A possibility to use health data to identify persons for research A possibility to merge clinical data to data from biobanks in an efficient manner A map to increase coordination of ongoing activities

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25 Examples of activities A review of responsibilities and division of tasks between government agencies Activities to increase public knowledge on the importance of knowledge generation based on health data The development of registerforskning and RUT as the single point of entry and ax till limpa solution for health data access A consolidation of all laws guiding use of health data and a national support function for legal interprenation A possibility to use health data to identify persons for reasearch A possibility to merge clinical data to data from biobanks in an efficient manner A map to increase coordination of ongoing activities Pilots to clarify opportunities and obstacles for use of health data, which may serve as the basis for developing laws & assignments to agencies Continue development of Nationella läkemedelslistan for hospital pharmaceuticals & other national health data such as lab & imaging To increase healthcare professionals posibilities to engage in digitalisation & research based on health data Continued intelligence on international development to continue to be competitive Support development of a possibility to donate your own health data A broad agreement for clinical research between all Life Science actors & a practical support function to facilitate collaboration

26 Samverkansregler Parter: SKL och Näringslivets företrädare Huvudöverenskommelse om klinisk forskning Parter: Landsting/regioner och Universitet Initialt separata Huvudöverenskommelser för respektive område Avtal om anslutning till Huvudöverenskommelse för Klinisk forskning Parter: Ordförande i Styrgrupp/-er för Huvudöverenskommelse och Näringslivets företrädare Initialt separata anslutningsavtal för respektive område Guide för genomförande Kliniska prövningar Guide för genomförande (Kvalitets)Register Guide för genomförande Biobanker Avtalsmallar Avtalsmallar Avtalsmallar Administrativ supportfunktion för samverkan och avtalsskrivande

27 Reflections from industry Long history of register data Existing processes for data access Political willingness Ambition towards real time data Fragmented primary care data and biobanks Many stakeholders Time consuming processes

28 THANK YOU!