Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle (PREFER) is a five-year project funded by the European Commission’s Innovative Medicines Initiative (IMI) 2 programme to evaluate different ways of assessing clinical patient preferences. The project will establish recommendations to support the development of guidelines for industry, Regulatory Authorities and HTA bodies on how and when to include patient perspectives on benefits and risks of medicinal products. The research project will run from October 2016 to September 2021.
Over the next five years, patient preferences will be studied both from the academia and industry’s points of view. This project will provide a better understanding of recommended best-practice approaches to patient-preference studies. The project will also show how patient preference studies can give valuable information to support decision making for regulators and HTA bodies.
PREFER is divided into four ‘work packages’. The Methodology Work Package’ which focuses on stakeholders’ concerns around the use of patient-preference studies. Based on what they find, they make recommendations about what methodologies to use in case studies that the “Case Study Work Package” will design and implement. After evaluating the case studies, the “Recommendations Work Package” takes over to draft recommendations based on the work. Finally, the “Management Work Package” then ensures that the work is completed in a timely manner. ECPC is one of the four patient organisations involved in the Patient Advisory Group of the project.
The European Cancer Patient Coalition is one of the four patient organisations in the Patient Advisory Group of the project. The role of ECPC is to lead the Patient Advisory Group and to ensure that the methodologies identified are consistent with the specific views, experiences and preferences of patients. ECPC is contributing horizontally across the four work packages and will contribute to the successful dissemination of the project’s deliverables.
Public Private Partnership
Uppsala University and Novartis lead “Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle (PREFER)” 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).
Patient Advisory Group: Isabelle Manneh-Vangramberen, ECPC Head of Health and Research Programmes
Project Coordinator: Mats G. Hansson, Professor of Biomedical Ethics, Centre for Research Ethics & Bioethics (CRB), Uppsala University
Project Leader: Conny Berlin, Global Head Quantitative Safety & Epidemiology Novartis
PREFER is funded by the Innovative Medicines Initiative (IMI): a part of the EU Horizon 2020 Programme, Grant Agreement N° 115966.