The PREFER Expert Network

The PREFER EXPERT NETWORK is a voluntary network of pharmaceutical companies, academic institutions, consultants, and patient representatives devoted to promoting the development and adoption of patient preferences in decision-making about medical products.

The group was created from the IMI PREFER public-private partnership to capitalize on the experience and expertise gained through the project, and to support its sustainability goals:

1. Continue to communicate, disseminate, and educate on patient preference studies best practices.
2. Increase the number of patient preference studies that build on the PREFER Recommendations and establish patient preference studies as accepted tools to generate evidence supporting medical product decision-making.
3. Continue to enhance the field of patient preference studies.

The PREFER EXPERT NETWORK is a forum for:

• Discussion and exchange of non-competitively sensitive information on patient preference research.
• Development and publication of research topics and best practices.
• Defining new research proposals.

The primary objectives of the PREFER EXPERT NETWORK are to:

• Exchange understanding, experience, and implementation practices of patient preference studies and their outcomes.
• Discuss policy and methodological questions related to patient preference research.
• Identify knowledge gaps and develop best practice of patient preference studies which may lead to new research topics.

The PREFER EXPERT NETWORK is eager to foster collaborations with those in the field of patient preference studies and encourage them to reach out with potential research opportunities dedicated to advancing knowledge in this important area. More details about how the PREFER EXPERT NETWORK operates are available in our “Rules of Engagement,” which govern our activities.

Contact the PREFER expert network: prefer-comms@gaggle.email

OUR ROOTS: THE IMI PREFER PROJECT

PREFER was a public-private collaborative research project under the Innovative Medicines Initiative (IMI) that ran from 2016-2022. In addition to academia and the biopharmaceutical companies, PREFER also included patient organisations, Health Technology Assessment (HTA) bodies and small and medium-sized enterprises.

PREFER was established to assess when and how it is best to perform and include patient preferences study results in decision making at various stages of the medical product life cycle. PREFER finished in May 2022 with the deliverable of PREFER Recommendations and a Qualification Opinion from EMA. These recommendations guide industry, regulatory authorities, HTA bodies and reimbursement agencies on when and how patient preference studies should be performed, and the results used to inform decision making.

Over the five years of IMI PREFER, project participants ran patient preference studies in both academic and industry settings. Their experience provided a better understanding of what is a recommended best-practice approach to patient-preference research. The project demonstrated how patient preference studies can give valuable information to support decision making for regulators and HTA bodies.

PREFER was divided into four ‘work packages.’ The methodology work package looked at the concerns stakeholders had around the use of patient-preference studies. Based on what they found, they made recommendations about what methodologies to use in case studies that the case study work package designed and carried out. After evaluating the case studies, the recommendations work package took over and drafted recommendations based on the work. The management work package made sure this work was done on time.

PUBLIC PRIVATE PARTNERSHIP

IMI aimed 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 supported research projects in the areas of safety and efficacy, knowledge management, and education and training. This project was a joint undertaking between the European Union's Horizon 2020 programme and the European Federation of Pharmaceutical Industries and Associations (EFPIA) with a 6 million Euro contribution from each side. PREFER was led by a co-ordinator from Uppsala University and a project leader from Novartis. The project had been structured with equal leadership and participation from academia and industry in all areas of the project, underlining the collaborative and inclusive approach that guided their work.