Including the patient perspective

PREFER will establish recommendations to support 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. 

Over the next five years, we will run patient preference studies in both academic and industry settings. Our experience will provide a better understanding of what will be a recommended best-practice approach to patient-preference studies. We 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 looks at the concerns stakeholders have around the use of patient-preference studies. Based on what they find, they will make recommendations about what methodologies to use in case studies that the  case study work package will design and carry out. After evaluating the case studies, Finally, the recommendations work package will take over and draft recommendations based on the work. The management work package will make sure this work is done on time.

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PREFER consortium at the Kick-off in Basel, October 2016
The PREFER consortium met in Leuven at the annual meeting of 2018. Photo: Anna Holm

Public private partnership

PREFER is a public-private collaborative research project under the Innovative Medicines Initiative (IMI). This means that in addition to academia and the biopharmaceutical companies, PREFER also includes patient organisations, Health Technology Assessment bodies and small and medium-sized enterprises.

IMI aims to boost biopharmaceutical innovation in Europe and to speed up the development of better and safer medicines for patients. Through its unique and innovative funding scheme, IMI supports research projects in the areas of safety and efficacy, knowledge management and education and training. This project is a joint undertaking between the European Union’s Horizon 2020 programme and the European Federation of Pharmaceutical Industries and Associations European Federation of Pharmaceutical Industries and Associations (EFPIA) with a 6 million Euro contribution from each side. PREFER is led by a co-ordinator from Uppsala University, and a project leader from Novartis. The project has been structured with equal leadership and participation from academia and industry in all areas of the project, underlining the collaborative and inclusive approach that guides our work.

  • PREFER | Achievements: first two years

  • Giving patients a voice in drug development

  • What is a patient preference?

  • Whose preferences are we collecting?

  • Why do we need a Public-Private partnership?

  • PREFER webinar: Eliciting Patients’ Preferences for Parkinson’s Devices

  • PREFER | Rheumatoid arthritis

  • PREFER | Rheumatoide arthritis (in German)

Last modified: 2021-10-15