BD4BO DO-IT
Big Data for Better Outcomes, policy innovation and healthcare system transformation
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
VIEW PARTNERS >
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.
This project is funded by the European Union