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


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.

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This project is funded by the European Union