Patient Preferences in benefit risk assessments during the drug life cycle


Start Date
End Date
IMI2 - Call 5
Grant agreement number

Type of Action: 
RIA (Research and Innovation Action)

IMI Funding
6 000 000
EFPIA in kind
6 000 000
Total Cost
12 000 001


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.

Achievements & News

IMI patient engagement projects sign memorandum of understanding
November 2018

Two IMI projects focusing on patient engagement, PARADIGM and PREFER, have signed a memorandum of understanding (MoU) to enhance collaboration between the projects and to maximise results. The MoU outlines how the projects will work together and share ideas. ###While PARADIGM is broadly focused on patient engagement at three points in the research and development process, PREFER looks at how and when it is best to perform and include patient preferences in decision making during the medical product life cycle. Through the MoU, the two projects hope to identify areas of mutual interest; identify any gaps that are hindering progress; establish collaborative activities to address these gaps; and share knowledge and data. The projects will also mutually participate in project events and use each other’s communications channels to promote news and results. In a joint statement, the projects write: ‘There is an ample opportunity to leverage the work of these projects, to avoid duplicate efforts as well as maximise results.’

Participants Show participants on map

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
  • F. 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 & Developpement, Chilly Mazarin, France
  • Takeda Development Centre Europe LTD, London, United Kingdom
Universities, research organisations, public bodies, non-profit groups
  • Centre Federal D'Expertise Des Soins De Sante, Brussels, Belgium
  • Erasmus Universitair Medisch Centrum Rotterdam, Rotterdam, Netherlands
  • Erasmus Universiteit Rotterdam, Rotterdam, Netherlands
  • Instituto 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)
  • Istituto Europeo Di Oncologia SRL, Milan, Italy
  • Mindbytes, Merksplas, Belgium
  • Steinbeisser Project Management Ug (Haftungsbeschrankt), Munich, Germany
Patient organisations
  • European Cancer Patient Coalition, Brussels, Belgium
  • European Patients’ Forum (EPF), Brussels, Belgium
  • International Alliance Of Patient'Organizations, London, United Kingdom
  • Muscular Dystrophy Group Of Great Britain And Northern Ireland, London, United Kingdom
Project coordinator
Mats. G. Hansson
Uppsala Universitet
Project leader
Conny Berlin
Novartis Pharma AG
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