PREFER
PREFER looks at how and when it is best to perform and include patient preferences in decision making during the medical product life cycle, involving stakeholders at all stages.
Details
- Period: 2016-10-01 – 2022-05-31
- Funder: Innovative Medicines Initiative
- Type of funding: Projektbidrag
The patient perspective
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.
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.
Collaborators
PREFER had 31 partners. The consortium was co-ordinated by Uppsala University's Centre for Research Ethics & Bioethics, and managed together with Novartis that acted as project leader.
People in the project
Mats Hansson
Senior professor in biomedical ethics with expertise in clinical issues, genetics and biobanks. Research focus on drug safety during pregnancy and breastfeeding, and genetic screening.
Josepine Fernow
Science communicator, project manager, communications strategist and CRB coordinator. Develops strategy and plan for science communication and research impact at the centre and in EU-funded research consortia.
Anna Holm Bodin
Science communicator and responsible for the Centre's web and social media. Responsible for communication in several EU-funded research consortia.
Karin Schölin Bywall
Associated researcher at CRB & Senior Lecturer at the School of Health, Care and Social Welfare, Division of Public Health Sciences, Mälardalen University.
Jorien Veldwijk
Associated researcher & Assistant professor at Erasmus School of Health Policy & Management. Expert on Discrete Choice Experiments.
Jennifer Viberg Johansson
Associate professor in medical ethics, with a research focus on methods that measure people's preferences and how to balance preferences against other ethical values; artificial intelligence and digital health information.
