PREFER
Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle
RIA (Research and Innovation Action)
PREFER is funded by the Innovative Medicines Initiative (IMI) 2, as part of the EU’s Horizon 2020 Programme, and the European Federation of Pharmaceutical Industries and Associations (EFPIA). Grant Agreement No 115966.
01/10/2016 – 30/09/2021 (5 years)
Uppsala University
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EFPIA companies
AbbVie Ltd, Maidenhead, United Kingdom
Actelion Pharmaceuticals LTD, Allschwil, Switzerland
Amgen Limited, Cambridge, United Kingdom
Astellas Pharma Europe BV, Leiden, Netherlands
Astrazeneca AB, Södertälje, Sweden
Bayer Pharma AG, Berlin, Germany
CSL Behring GMBH, Marburg, Germany
Eli Lilly and Company Limited, Basingstoke, United Kingdom
Hoffmann-La Roche AG, Basel, Switzerland
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
Pfizer Limited, Sandwich, Kent, United Kingdom
Sanofi-Aventis Recherche & Développement, Chilly Mazarin, France
Takeda Development Centre Europe LTD, London, United Kingdom
Universities, research organisations, public bodies and non-profit groups
Erasmus Universitair Medisch Centrum Rotterdam, Rotterdam, Netherlands
Erasmus Universiteit Rotterdam, Rotterdam, Netherlands
Federaal Kenniscentrum Voor De Gezondheidszorg, Brussels, Belgium
Istituto Tumori ‘Giovanni Paolo II’, Bari, Italy
Katholieke Universiteit Leuven, Leuven, Belgium
The University of Birmingham, Birmingham, United Kingdom
Universitair Medisch Centrum Utrecht, Utrecht, Netherlands
Universitatsklinikum Erlangen, Erlangen, Germany
University of Newcastle Upon Tyne, Newcastle Upon Tyne, United Kingdom
Uppsala Universitet, Uppsala, Sweden
Small and medium-sized enterprises (SMEs) and mid-sized companies (<€500 m turnover)
Mindbytes, Merksplas, Belgium
Steinbeisser Project Management Ug (Haftungsbeschrankt), Munich, Germany
Patient organisations
European Cancer Patient Coalition (ECPC), Brussels, Belgium
European Patients’ Forum (EPF), Brussels, Belgium
International Alliance of Patients’ Organizations, London, United Kingdom
Muscular Dystrophy Group of Great Britain and Northern Ireland, London, United Kingdom
Non-EFPIA companies
Istituto Europeo di Oncologia SRL, Milan, Italy
Why it matters
Industry, regulatory authorities, health technology assessment bodies, reimbursement agencies and patient organisations agree that the patient’s preferences are vital in all medical research and particularly in drug development, however there is little guidance on conducting and using such studies. PREFER is working to provide a set of systemic methodologies and recommendations to assess, engage and include patient perspectives during the development, approval and post-approval of new therapies, providing a better understanding of recommended best-practice approaches. The project gives an indication of how patient preference studies can provide valuable information to support decision-making and establishing recommendations to support the development of guidelines for industry, regulatory authorities and HTA bodies on how and when to include patient perspectives on the benefits and risks of medicinal products.
“Through various Innovative Medicines Initiative (IMI) projects, including PREFER, patient advocates voices have become increasingly present in all aspects of drug development: from fundamental research to regulatory aspects, pricing and reimbursement decisions at the EU level.”
What ECPC does
ECPC leads three other patient organisations in the Patient Advisory Group (PAG) to ensure that the methodologies identified are consistent with the specific views, experiences and preferences of patients, from contributing to the overall project design, setting up patient focus groups, and reviewing surveys, study protocols and guidelines, to the successful communication and dissemination of the project’s deliverables. ECPC sits on the project Steering Committee and Advisory Board as the Lead Patient Representative influencing research priorities to match patients’ needs and the inclusion of quality of life indicators.
This project is funded by the European Union