PREFER: New Project on Eliciting Patients’ Preferences in Benefit Risks Assessment


This October, a new public private research initiative called PREFER, is launched to assess when and how patient preferences on benefits and risks should be incorporated in decisions on medicinal products. EPF sits in the Patient Advisory Group, together with others patients organisations.

The patient perspective is important in all medical research, and particularly in drug development. Drugs are developed for patients and there is an emerging consensus that they should be involved in determination of benefit-risk considerations during the entire life cycle of medicinal products.

The patient voice is becoming increasingly important, not only for the companies that develop new therapies, but also for the authorities that assess, regulate and decide which drugs are effective, well tolerated and cost-effective for patients and the community.

Industry, regulatory authorities, health technology assessment bodies, reimbursement agencies and patient organisations are in agreement regarding the high value of patient preferences. However, there is little guidance on conducting and using such studies in pharmaceutical industry, regulatory, and reimbursement decision environment. To bridge that gap, PREFER, a five year project funded by the Innovative Medicines Initiative (IMI), will evaluate and test different preference elicitation methods. PREFER will provide a set of systematic methodologies and recommendations to assess, engage and include patient perspectives in medicines’ development.

The project will conduct patient preference studies in three disease areas where patient and clinical research partners have expertise: cancer, rheumatoid arthritis and neuromuscular disorders. Additional patient preference studies, covering other disease areas will also be considered.

The PREFER project is co-led by the Uppsala University (Sweden) and Novartis. EPF is one of the four patient organisations participating in the Patient Advisory Group of the project, together with the European Cancer Patients Coalition (ECPC), the International Alliance of Patients’ Organizations (IAPO), and Muscular Dystrophy UK (MDUK). Our role is to ensure that the methodologies identified are consistent with the specific views, experiences and preferences of patients. Another important priority for EPF is to ensure proper synergies with other initiatives, especially EUPATI.

The kick-off meeting of the IMI project PREFER takes place on October 27-28th 2016 at in Basel.

For more information on PREFER please visit:

Should you wish to find out more about benefit risks, or the medicines’ development process more generally, please visit the EUPATI Toolbox at


Contact person:

Walter Atzori, Director of Programmes and Operations.