CSA (Coordination and Support Action)

BD4BO DO-IT is funded by the Innovative Medicines Initiative (IMI) 2, set up under Big Data for Better Outcomes (BD4BO), part of the EU’s Horizon 2020 Programme, and the European Federation of Pharmaceutical Industries and Associations (EFPIA). Grant Agreement No 116055.

01/02/2017 – 30/01/2019 (2 years)

London School of Economics and Political Science


EFPIA companies

Amgen, Brussels, Belgium

Asociación Nacional Empresarial de la Industria Farmacéutica, Madrid, Spain

Bayer Aktiengesellschaft, Leverkusen, Germany

Boehringer Ingelheim International gmbh, Ingelheim, Germany

Celgene Management SARL, Couvet, Switzerland

Eli Lilly and Company Limited, Basingstoke, United Kingdom

Hoffmann-La Roche AG, Basel, Switzerland

Fédération Européenne d’Associations et d’Industries Pharmaceutiques, Brussels, Belgium

Glaxosmithkline Research and Development LTD., Brentford, Middlesex, United Kingdom

Health iQ Limited, London, United Kingdom

Institut de Recherches Internationales Servier, Suresnes, France

Intersystems GMBH, Darmstadt, Germany

Janssen Pharmaceutica Nv, Beerse, Belgium

Merck Kommanditgesellschaft Auf Aktien, Darmstadt, Germany

Merck Sharp & Dohme Corp, Whitehouse Station, New Jersey, United States

Novartis Pharma AG, Basel, Switzerland

Novo Nordisk A/S, Bagsvaerd, Denmark

Pfizer Limited, Sandwich, Kent, United Kingdom

Sanofi-Aventis Recherche & Développement, Chilly Mazarin, France

The Association of the British Pharmaceutical Industry, London, United Kingdom

UCB Biopharma SPRL, Brussels, Belgium

Verband Forschender Arzneimittelhersteller Ev, Berlin, Germany


Universities, research organisations, public bodies and non-profit groups

Folkehelseinstituttet, Oslo, Norway

Imperial College of Science, Technology and Medicine, London, United Kingdom

Institut National de la Santé et de la Recherche Médicale, Paris, France

London School of Economics and Political Science, London, United Kingdom

National Institute for Health and Care Excellence, Manchester, United Kingdom

Semmelweis Egyetem, Budapest, Hungary

Statens Legemiddelverk, Oslo, Norway

Tandvards-Och Lakemedelsformansverket, Stockholm, Sweden

The University of Liverpool, Liverpool, United Kingdom

Tmf – Technologie Und Methodenplattform Fur Die Vernetzte Medizinische Forschung Ev, Berlin, Germany

Universita Commerciale Luigi Bocconi, Milan, Italy


Small and medium-sized enterprises (SMEs) and mid-sized companies (<€500 m turnover)

Ihe, Institutet For Halso- Och Sjukvardsekonomi Aktiebolag, Lund, Sweden


Patient organisations

European Cancer Patient Coalition (ECPC), Brussels, Belgium

The European Multiple Sclerosis Platform Aisbl, Brussels, Belgium

Why it matters

Institutions across Europe house rich databases with detailed personal and biological information. If linked, this big data has the potential to deliver insights that will allow healthcare systems to ensure that the patients are truly at the centre of decision-making, with outcomes that matter, and resources focused on treatments that really make a difference.

The Big Data for Better Outcomes (BD4BO) programme was launched with the objective of harnessing the opportunities of big data to promote patient-centred, outcomes-focused healthcare in Europe and to develop innovative methods for integrating, analysing and using this big data. The BD4BO, Policy Innovation, and Healthcare Systems Transformation (BD4BO DO-IT) consortium acts as the Coordination and Support Action for 4 disease-specific projects: Alzheimer’s disease (ROADMAP), hematologic malignancies (HARMONY), cardiovascular diseases (BIGDATA@HEART) and prostate cancer (PIONEER).

“The adverse effects of inaccurate health records ripple out into a variety of areas, raising obvious concerns about the reliability and usefulness of patient health data when applied to risk-based analytics care plans, modelling, payment reforms and value-based reimbursement, as well as population health programming. EU and national policy-makers alike need to work together to ensure the patient remains at the centre of such initiatives by addressing their concerns and building mutual trust.”

What ECPC did

ECPC collaborated with European expert patient groups to develop informed consent forms, minimum data privacy standards and supporting materials for the BD4BO overarching projects including Clinical, Non-Clinical and Biobanking Informed Consent Forms (ICFs), as well as concise and comprehensive educational material which will provide European patients with the basic knowledge to understand the importance and power of clinical trials, bio banking and exploratory research such as on biomarkers.

ECPC led the coordination of focus groups to review project documents and provide critical insight to further develop the ICFs by integrating patient experts’ input. As an active member in the project’s Communications team, ECPC worked closely on overall project branding, communication planning, website development and outreach activities, contributing to the successful dissemination of the project’s deliverables and overall project sustainability beyond the project expiration date.

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This project is funded by the European Union