3rd Nordic conference on Real World Data, Collaboration between Pharma industry and Academia, November 28-29 2018, Helsinki

Thank you for participating the conference!

The aim of the conference was to show the possibilities existing in the Nordic countries and across the Nordic Region. The main focus of this conference was on RWE and Innovative Medicines Initiative (IMI) Better Data for Better Outcomes (BD4BO) etc. The aim was also to boost collaboration between pharma and academia and between the Nordic countries.  


Wednesday 28.11.2018

9:50-11:20 BREAK-IN SESSION 

                     9:50-10:20 Precision Economics, Not Just Genetics – The Impact of Real-World User Behaviour and Treatment Adherence Patterns on Health and Economic Outcomes. Janne Martikainen, Professor, University of Eastern Finland


                         10:20-10:40 Register Based Impact Research for vaccines in Phase IV - a Finnish example with the public health perspective. Arto Palmu, Research manager, National Institute for Health and Welfare (THL)

                     10:40-11:10 PICOSTEPS, Digitalization and Real-World Modelling: Communicating Complex Cases to the Decision Makers. Erkki Soini, CEO, ESiOR Oy



12:15 Innovative Medicines Initiative (IMI) boosting innovation and collaboration for 10 years - how PPP can support RWE infrastructure and useMagda Chlebus, Executive Director, Efpia

12:35 Pharma and Evidence Generation – What is the Future? Christin Prutz, Director of Health Economics and Market Access, Janssen     

13:05 - 14.45 Session: RWE strategies and development in the Nordic region.               

13.30     Finland: The secondary use of health data legislation and the National Health Data HUB. Tuija Ikonen, SMO, Ministry of Social Affairs and Health

13:55     Norway: The Norwegian Health Data Strategy – an opportunity for sustainable healthcare and for research and development of new solutions. Monica Larssen, Manager R&D, The Association of the Pharmaceutical Industry in Norway – LMI

14:15     Sweden: The Swedish Life Science strategy – Health DataAnders Blanck, Director General, and Karolina Antonov, Head of StrategyThe Swedish Association of the Pharmaceutical Industry

Breakout session 1: RWE Activities in the Nordic Region or Break-out Session

15:10 NordForsk Research Infrastructure for Nordic Health DataMagnus Eriksson, Business & Information Architect - Register Based Research, Swedish Research Council

15:35  FINOSE - Nordic collaboration in Health Technology AssessmentVesa Kiviniemi, Head of Assessment, Finnish Medicines Agency Fimea

16:00 The Future of PROMs: the promise of PROMIS. John Chaplin, Associate Professor, University of Gothenburg

16:25  From registers to personal dataJaana Sinipuro, Project Director, Sitra

16:45  The future of health data in Denmark for Real World Studies. Jan Poulsen, Head of the Department for Data Deliverance & Research Services, Danish Health Data Authority

17:15 Turning Hospital Biobank Data into Real-World Evidence using Artificial Intelligence Tools. Samu Kurki, PhD, Senior Data Scientist, Auria Biobank

Breakout session 2

15:10 Finnish hospital biobanks and industrial RWE-studies- opportunities today and tomorrow. Mariann Lassenius, RWE manager and Iiro Toppila, Biostatistician Medaffcon Oy

15:40  How disease specific registers can help healthcare to collect RWD data in real time? Petteri Viljanen, CEO, BCB Medical

16:10 The rise of data science in healthcare and commercial pharma. Chief Researcher Arun Micheelsen, DLI MI

16:45 Enriched RWE-study in the Nordics - a case study. Susanne Kihlblom, Head of Technical Network Team Nordics, IQVIA

17:15 Introduction to the Finnish Cost of Cancer Study - Combining Patient and Healthcare System PerspectivesMarcin Balcerzak, Country Manager and Heli Salminen-Mankonen, Health Economics/RWE Team Lead, Oriola’s Farenta Expert Services


Thursday 29.11.2018

9:00 Overview of the IMI Big Data for Better Outcomes (BD4BO) Programme

Presentation introduces objectives and themes of the BD4BO overall; as well as the BD4BO disease specific programs and the European Health Data Network (EHDN).

The Innovative Medicines Initiative’s (IMI) Big Data for Better Outcomes Programme’s (BD4BO) overall objective is to improve health outcomes and healthcare systems in Europe by maximising the potential of Big Data, and to promote innovative methods for harmonising, accessing, and analysing data. The BD4BO programme comprises several disease-specific projects focusing on Alzheimer’s disease, hematologic malignancies, cardiovascular diseases, and prostate cancer, with potential others at a later date. Furthermore, the programme provided a structure for empowering patients as data owners and partners in research. Shahid Hanif from the ABPI provided overview on the BD4BO programme. Catherine Reed presented the ROADMAP (Alzheimers disease) and Alicia Uijl the BigData@Heart.  Furthermore, Nigel Hughes talked about the The European Health Data and Evidence Network (EHDEN).

A panel discussion with all/various stakeholders: Kaisa Taipale moderated a session on Acceptability of RWE in decision making where Niklas Hedberg discussed a TLV diabetes project, Catherine Reed introduced the ROADMAP “data cube” and Nigel Hughes provided perspectives on practical implications of the EHDEN for decision making. These short talks provided context for panel discussion on “What is needed for RWE to be acceptable for decision making?” And “When can we expect that to happen?” We had Sören Toksvig Klitkou (NoMA), Shahid Hanif (ABPI), Niklas Hedberg (TLV), Nigel Hughes (EHDEN) and Emmi Toivonen (Patient Org.) participating in the panel.

Break-out session 1: 13:30-14:30

IMI 10 years: How to involve Academic groups, SMEs etc from the Nordic Region in IMI Calls, Consortia etc. Chair: Sampo Sammalisto, Business Finland, Speakers / Panelists: Gunnar Sandberg, Juha Klefström and Antti Haapalinna

Break-out session 2: 13:30-14:30

Public-Private Partnership in RWD research: University Hospital perspectiveAnne Pitkäranta, Research Director, Helsinki University Hospital

Managing real-world data in GDPR era. Sirpa Soini,  National Institute for Health and Welfare

Swimming in data lakes: beginner’s guide. Tero Ylisaukko-oja, CEO, MedEngine Oy


More information: Senior Advisor Mia Bengtström, mia.bengtstrom@pif.fi, tel: +358 9 6150 4913.