Patient Preferences in benefit risk assessments during the drug life cycle


Start Date
End Date
IMI2 - Call 5
Grant agreement number

IMI Funding
6 000 000
EFPIA in kind
6 000 000
Total Cost12 000 001


Patient perspective is important in all medical research and particularly in drug development. The PREFER project aims to assess when and how patient preferences on benefits and risks should be incorporated into decisions on medicinal products. While industry, regulatory authorities, health technology assessment bodies, reimbursement agencies and patient organisations all agree that patient preferences are very valuable, there is little guidance on conducting and using such studies. The goal of PREFER will be to provide a set of systematic methodologies and recommendations to assess, engage and include patient perspectives during the development, approval, and post-approval of new therapies. PREFER brings together experts from academic research institutions, pharmaceutical companies, patient organisations, a health technology assessment body, and small and medium-sized enterprises. In addition the consortium has set up stakeholder advisory groups to work closely with patients, regulators, health technology assessment (HTA) bodies and payers, to ensure that recommendations are evidence based, relevant and useful.

Participants Show participants on map

EFPIA companies
  • AbbVie Ltd, Maidenhead, United Kingdom
  • Actelion Pharmaceuticals Ltd, Allschwil, Switzerland
  • Amgen, Cambridge, United Kingdom
  • Astellas Pharma Europe BV, Leiden, Netherlands
  • AstraZeneca AB, Södertälje, Sweden
  • Bayer AG, Berlin, Germany
  • CSL Behring GmbH, Marburg, Germany
  • Eli Lilly and Company Ltd, Basingstoke, United Kingdom
  • F. Hoffmann-La Roche Ltd, Basel, Switzerland
  • Janssen Pharmaceutica NV, Beerse, Belgium
  • Merck KGaA, 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 Research and Development, Chilly Mazarin, France
  • Takeda Development Centre Europe Ltd., London, United Kingdom
Universities, research organisations, public bodies, non-profit groups
  • Erasmus Universitair Medisch Centrum Rotterdam, Rotterdam, Netherlands
  • Erasmus University Rotterdam, Rotterdam, Netherlands
  • Federaal Kenniscentrum voor de Gezondheidszorg / Centre fédéral d’expertise des soins de santé, Brussels, Belgium
  • International Alliance of Patients' Organizations, London, United Kingdom
  • Istituto Europeo di Oncologia S.r.l., Milan, Italy
  • Istituto Tumori G Paolo II, Bari, Italy
  • Katholieke Universiteit Leuven, Leuven, Belgium
  • Steinbeißer Project Management, Munich, Germany
  • Universitair Medisch Centrum Utrecht , Utrecht, Netherlands
  • University of Birmingham, Birmingham, United Kingdom
  • Universitätsklinikum Erlangen, Erlangen, Germany
  • Univesity 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
Patient organisations
  • European Cancer Patient Coalition, Brussels, Belgium
  • Forum Europeen Des Patients - European Patients' Forum, Brussels, Belgium
  • Muscular Dystrophy UK, London, United Kingdom


Project coordinator
Uppsala universitet
EFPIA project leader
Conny Berlin
Novartis Pharma AG
General questions
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