IMI2 Big Data for Better Outcomes (BD4BO) Coordination and Support Action launched
Press Release: On 1 February 2017, a public-private consortium was launched to facilitate the transition towards outcomes-focused healthcare systems across Europe. A wealth of emerging data from evolving data sources provides an opportunity for healthcare systems to measure outcomes that matter to patients, allowing resources to be focused on highly effective treatments.
Over the next two years, the Big Data for Better Outcomes, Policy Innovation, and Healthcare Systems Transformation BD4BO-DO>IT consortium will coordinate the IMI2 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, prostate cancer, etc.
To fully exploit the transformative potential of big data in healthcare, the detailed personal and biological information available in existing databases need to be considered across the spectrum of care delivery, starting from the development of innovative medicines and treatments to market access, adoption and use in healthcare systems by providers and patients. 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.
"The BD4BO Programme will provide a structure for empowering patients as data owners and partners in research," said Natacha Bolanos, Board member of the European Cancer Patient Coalition and Patient and Public Affairs Manager at the Spanish Group of Cancer Patients (GEPAC). "It will ensure that informed consent and data privacy standards strike a balance between protecting individual privacy and promoting innovation. The use of Big Data will identify patient-relevant outcomes that will determine which interventions improve outcomes and increase patients' quality of life."
"As member of DO-IT consortium, the European Cancer Patient Coalition will mainly represent the rights of our patients. Therefore, all documents of the project will be legally reviewed by our lawyers - members of the Legal Network for Cancer Patients - so that they comply with European legal framework on the protection of personal data." said Dan Cimpoeru, Board member of the European Cancer Patient Coalition.
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. BD4BO-DO>IT 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
- recommend areas for future collaborative research to address gaps in standards, methodologies, tools, etc.
Half of the project budget of 7,2 million, is provided in the form of grants for public partners by the Innovative Medicines Initiative Joint Undertaking (IMI JU) and half is contributed in-kind by the private partners.
Consortium Members: London School of Economics and Political Science (Project Coordinator), Novartis (Project Lead), National Institute for Health and Care Excellence, Swedish Dental and Pharmaceutical Benefits Agency, European Cancer Patient Coalition, European Multiple Sclerosis Platform, Semmelweis University, Imperial College London, Swedish Institute for Health Economics, Centre for Research in Healthcare Management at Università Bocconi, Norwegian Institute of Public Health, The Association of the British Pharmaceutical Industry, Amgen, Bayer, Boehringer Ingelheim, Celgene, European Federation of Pharmaceutical Industries and Associations (EFPIA), Farmaindustria, GlaxoSmithKline, Health iQ, InterSystems, Janssen Pharmaceutica, Eli Lilly and Company, Merck Group, MSD Sharp & Dohme, Novo Nordisk, Pfizer, Roche, Sanofi, Servier, UCB, Association of Research-Based Pharmaceutical Companies (VfA), Norwegian Medicines Agency, Technology, Methods and Infrastructure for Networked Medical Research (TMF), Inserm Toulouse.
* This project has received funding from the Innovative Medicines Initiative 2 Joint undertaking under grant agreement No 116055. This Joint Undertaking receives support from the European Union's Horizon 2020 research and innovation programme and the EFPIA. *