BD4BO DO-IT is a two-year project funded by the European Commission’s Innovative Medicines Initiative (IMI) 2 programme launched to facilitate the transition towards outcomes-focused healthcare systems across Europe. The Coordination and Support Action will run from February 2017 to February 2019.
Over the next two years, the Big Data for Better Outcomes, Policy Innovation, and Healthcare Systems Transformation (BD4BO DO-IT) consortium will coordinate the IMI 2 Big Data for Better Outcomes (BD4BO) programme, identifying and addressing opportunities for data-driven healthcare system transformation based on input from healthcare systems stakeholders and on knowledge, data and tools developed in the BD4BO disease specific projects: Alzheimer’s Disease, hematologic malignancies, cardiovascular diseases and prostate cancer.
To fully benefit from the transformative potential of big data in healthcare, the detailed personal and biological information available in existing databases needs to be considered from the point of view of care-delivery, from the development of innovative medicines and treatments to market access, adoption and use within healthcare systems. The 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 big data.
BD4BO DO-IT will act as a coordination platform (Coordination and Support Action) for the programme, realising synergies across disease specific projects and maximising impact on European healthcare systems. The project will in particular: aggregate learnings and disseminate findings from the BD4BO projects on methods of selecting and measuring outcomes in real world settings, develop minimum data privacy standards for the collection, use, storage and transfer of clinical and biological data, engage with key stakeholders to understand value and limitations of outcomes based approaches, and recommend areas for future collaborative research to address gaps in standards, methodologies and tools, among others.
The European Cancer Patient Coalition is collaborating with European expert patient groups to develop informed consent forms, minimum data privacy standards, and supporting materials for the BD4BO overarching projects. ECPC has been collaborating with partners within the project in drafting of the DO-IT Clinical and Non-Clinical, as well as Biobanking Informed Consent Forms (ICFs) and is leading on coordinating a focus group to review the documents and provide critical insight to further develop the ICFs by integrating patient experts’ input.
Furthermore, ECPC is participating along with other consortium members in the compiling of 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 biomarkers. Patient organisations and other stakeholders will also generate an iterative, consultative process to develop successive versions of minimum data privacy standards and structure recommendations for these ICFs.
ECPC is an active member in the projects’ Communications team and has been working closely on overall project branding, communication planning, website development, and out-reach activities and will finally contribute to the successful dissemination of the project’s deliverables.
Public Private Partnership
London School of Economics and Political Science and Novartis lead the “Big Data for Better Outcomes, Policy Innovation, and Healthcare Systems Transformation (BD4BO DO-IT)” under the Innovative Medicines Initiative 2 Joint Undertaking. IMI is a partnership between the European Union’s Horizon 2020 programme and the European pharmaceutical industry (represented by EFPIA, the European Federation of Pharmaceutical Industries and Associations).
ECPC: Isabelle Manneh-Vangramberen, ECPC Head of Health and Research Programmes
Project Coordinator: Max Salcher, London School of Economics and Political Science
BD4BO DO-IT is funded by the Innovative Medicines Initiative (IMI): a part of the EU Horizon 2020 Programme, Grant Agreement N° 116055.