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 center 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.
Publications
Part of Medical decision making, p. 189-202, 2024
- DOI for Can the General Public Be a Proxy for an "At-Risk" Group in a Patient Preference Study?: A Disease Prevention Example in Rheumatoid Arthritis
- Download full text (pdf) of Can the General Public Be a Proxy for an "At-Risk" Group in a Patient Preference Study?: A Disease Prevention Example in Rheumatoid Arthritis
Patients as research partners in preference studies: learnings from IMI-PREFER
Part of Research Involvement and Engagement, 2023
Part of Patient, p. 179-190, 2023
Part of Patient, p. 641-653, 2023
Exploring preferences of at-risk individuals for preventive treatments for rheumatoid arthritis
Part of Scandinavian Journal of Rheumatology, p. 449-459, 2023
Examining patient and professional perspectives in the UK for gene therapy in haemophilia
Part of Haemophilia, p. 588-609, 2022
Part of RMD Open, 2022
Part of Value in Health, p. 579-588, 2022
What matters most to patients with multiple myeloma? A Pan-European patient preference study
Part of Frontiers in Oncology, 2022
Part of Rheumatology, p. 596-605, 2022
Part of Arthritis Research & Therapy, 2022
Part of Patient, 2021
Part of Frontiers in Medicine, 2021
Part of Patient, 2021
Patient Preferences for Multiple Myeloma Treatments: A Multinational Qualitative Study
Part of Frontiers in Medicine, 2021
Part of Haemophilia, 2021
Part of Frontiers in Medicine, 2021
Part of BMJ Open, 2021
- DOI for Treatment preferences for preventive interventions for rheumatoid arthritis: protocol of a mixed methods case study for the Innovative Medicines Initiative PREFER project
- Download full text (pdf) of Treatment preferences for preventive interventions for rheumatoid arthritis: protocol of a mixed methods case study for the Innovative Medicines Initiative PREFER project
Part of Patient Education and Counseling, p. 2577-2585, 2021
Part of Patient Preference and Adherence, p. 2509-2517, 2021
Part of Patient Preference and Adherence, p. 1331-1345, 2021
- DOI for Taking into Account Patient Preferences: A Consensus Study on the Assessment of Psychological Dimensions Within Patient Preference Studies
- Download full text (pdf) of Taking into Account Patient Preferences: A Consensus Study on the Assessment of Psychological Dimensions Within Patient Preference Studies
Part of Frontiers in Pharmacology, 2021
Part of Frontiers in Pharmacology, 2021
Case 2 best-worst scaling: For good or for bad but not for both
Part of Journal of Choice Modelling, p. 100325-100325, 2021
Part of Frontiers in Public Health, 2021
Patient Centricity in Patient Preference Studies: The Patient Perspective
Part of Frontiers in Medicine, p. 1-10, 2020
Part of Patient, 2020
Patient perspectives regarding gene therapy in haemophilia: Interviews from the PAVING study
Part of Haemophilia, p. 1-8, 2020
Part of Health Policy, p. 1325-1332, 2020
- DOI for An overview of critical decision-points in the medical product lifecycle: Where to include patient preference information in the decision-making process?
- Download full text (pdf) of An overview of critical decision-points in the medical product lifecycle: Where to include patient preference information in the decision-making process?
Part of Wellcome Open Research, 2020
- DOI for A study protocol for quantifying patient preferences in neuromuscular disorders: a case study of the IMI PREFER Project [version 1; peer review: 1 approved]
- Download full text (pdf) of A study protocol for quantifying patient preferences in neuromuscular disorders: a case study of the IMI PREFER Project [version 1; peer review: 1 approved]
Part of BMC Medical Informatics and Decision Making, 2020
Part of Arthritis Research & Therapy, 2020
Part of Patient, p. 513-526, 2019
- DOI for Patient Preferences in the Medical Product Life Cycle: What do Stakeholders Think? Semi-Structured Qualitative Interviews in Europe and the USA
- Download full text (pdf) of Patient Preferences in the Medical Product Life Cycle: What do Stakeholders Think? Semi-Structured Qualitative Interviews in Europe and the USA
Part of BMC Medical Informatics and Decision Making, 2019
Part of Drug Discovery Today, p. 1324-1331, 2019
Part of Drug Discovery Today, p. 57-68, 2019
Part of Frontiers in Pharmacology, 2019
Part of Frontiers in Pharmacology, 2019
Part of ISPOR Value & Outcomes Spotlight, p. 19-21, 2018
Part of Patient, p. 263-266, 2017
Part of Value in Health, 2017
Part of Value in Health, 2017
Part of Value in Health, 2017
Compendium Of Methods For Measuring Patient Preferences In Medical Treatment
Part of Value in Health, 2017