Publications in scientific journals
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Acceptable risks of treatments to prevent rheumatoid arthritis among first-degree relatives: demographic and psychological predictors of risk tolerance
Part of RMD Open, p. e002593-e002593, 2022.
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Preferences for preventive treatments for rheumatoid arthritis: discrete choice survey in the UK, Germany and Romania
Part of Rheumatology, 2022.
DOI for Preferences for preventive treatments for rheumatoid arthritis: discrete choice survey in the UK, Germany and Romania Download full text (pdf) of Preferences for preventive treatments for rheumatoid arthritis: discrete choice survey in the UK, Germany and Romania
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Exploring preferences of at-risk individuals for preventive treatments for rheumatoid arthritis
Part of Scandinavian Journal of Rheumatology, p. 1-11, 2022.
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Systematic review of quantitative preference studies of treatments for rheumatoid arthritis among patients and at-risk populations
Part of Arthritis Research & Therapy, 2022.
DOI for Systematic review of quantitative preference studies of treatments for rheumatoid arthritis among patients and at-risk populations Download full text (pdf) of Systematic review of quantitative preference studies of treatments for rheumatoid arthritis among patients and at-risk populations
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Case 2 best-worst scaling: For good or for bad but not for both
Part of Journal of Choice Modelling, p. 100325-100325, 2021.
DOI for Case 2 best-worst scaling: For good or for bad but not for both
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Opportunities and Challenges of Web-Based and Remotely Administered Surveys for Patient Preference Studies in a Vulnerable Population
Part of Patient Preference and Adherence, p. 2509-2517, 2021.
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Does being exposed to an educational tool influence patient preferences?: The influence of an educational tool on patient preferences assessed by a discrete choice experiment
Part of Patient Education and Counseling, p. 2577-2585, 2021.
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Patient Preferences for Lung Cancer Treatments: A Study Protocol for a Preference Survey Using Discrete Choice Experiment and Swing Weighting
Part of Frontiers in Medicine, 2021.
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Key Determinants of Health-Related Quality of Life Among Advanced Lung Cancer Patients: A Qualitative Study in Belgium and Italy
Part of Frontiers in Pharmacology, 2021.
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Taking into Account Patient Preferences: A Consensus Study on the Assessment of Psychological Dimensions Within Patient Preference Studies
Part of Patient Preference and Adherence, p. 1331-1345, 2021.
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Treatment preferences for preventive interventions for rheumatoid arthritis: protocol of a mixed methods case study for the Innovative Medicines Initiative PREFER project
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
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Appraising patient preference methods for decision-making in the medical product lifecycle: an empirical comparison
Part of BMC Medical Informatics and Decision Making, 2020.
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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 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]
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An overview of critical decision-points in the medical product lifecycle: Where to include patient preference information in the decision-making process?
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?
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Patient preferences on rheumatoid arthritis second-line treatment: a discrete choice experiment of Swedish patients
Part of Arthritis Research & Therapy, 2020.
DOI for Patient preferences on rheumatoid arthritis second-line treatment: a discrete choice experiment of Swedish patients Download full text (pdf) of Patient preferences on rheumatoid arthritis second-line treatment: a discrete choice experiment of Swedish patients
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Patient Centricity in Patient Preference Studies: The Patient Perspective
Part of Frontiers in Medicine, p. 1-10, 2020.
DOI for Patient Centricity in Patient Preference Studies: The Patient Perspective
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Opportunities and challenges for the inclusion of patient preferences in the medical product life cycle: a systematic review
Part of BMC Medical Informatics and Decision Making, 2019.
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Understanding Patients' Preferences: A Systematic Review of Psychological Instruments Used in Patients' Preference and Decision Studies
Part of Value in Health, p. 491-501, 2019.
DOI for Understanding Patients' Preferences: A Systematic Review of Psychological Instruments Used in Patients' Preference and Decision Studies Download full text (pdf) of Understanding Patients' Preferences: A Systematic Review of Psychological Instruments Used in Patients' Preference and Decision Studies
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Design, Conduct, and Use of Patient Preference Studies in the Medical Product Life Cycle: A Multi-Method Study
Part of Frontiers in Pharmacology, 2019.
DOI for Design, Conduct, and Use of Patient Preference Studies in the Medical Product Life Cycle: A Multi-Method Study Download full text (pdf) of Design, Conduct, and Use of Patient Preference Studies in the Medical Product Life Cycle: A Multi-Method Study
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Factors and Situations Affecting the Value of Patient Preference Studies: Semi-Structured Interviews in Europe and the US
Part of Frontiers in Pharmacology, 2019.
DOI for Factors and Situations Affecting the Value of Patient Preference Studies: Semi-Structured Interviews in Europe and the US Download full text (pdf) of Factors and Situations Affecting the Value of Patient Preference Studies: Semi-Structured Interviews in Europe and the US
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Patient Preferences in the Medical Product Life Cycle: What do Stakeholders Think? Semi-Structured Qualitative Interviews in Europe and the USA
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
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Giving patients' preferences a voice in the medical product lifecycle: why, when and how?: The public-private PREFER project: Work package 2
Part of ISPOR Value & Outcomes Spotlight, p. 19-21, 2018.
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Factors and situations influencing the value of patient preference studies along the medical product lifecycle: a literature review
Part of Drug Discovery Today, 2018.
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Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project
Part of Patient, p. 263-266, 2017.
DOI for Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project Download full text (pdf) of Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project
Abstracts from PREFER
Publications
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Stakeholder Perspectives On The Integration Of Patient Preferences In The Medical Product Life Cycle: A Multimethod Approach
Part of Value in Health, p. A689-A689, 2017.
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Rheumatoid Arthritis Patients’ Perspectives On The Value Of Patient Preferences In Regulatory Decision-Making During Drug Development: A Qualitative Study
Part of Value in Health, p. A540-A540, 2017.
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Compendium Of Methods For Measuring Patient Preferences In Medical Treatment
Part of Value in Health, p. A684-A685, 2017.
DOI for Compendium Of Methods For Measuring Patient Preferences In Medical Treatment
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Conditions And Contextual Factors That Influence The Utility And Application Of Patient Preference Studies: A Study Combining Literature And Focus Groups
Part of Value in Health, p. A690-A691, 2017.
PREFER Recommendations
Why, when and how to assess and use patient preferences in medical product decision-making
The PREFER project has developed recommendations for how and when it is best to perform and include patient preferences in decision making during the medical product life cycle. Supporting the development of guidelines for structured patient input into decision-making for the pharmaceutical industry, regulatory authorities, health technology assessment bodies and reimbursement agencies!
An updated version was published on 30 May after receiving a positive qualification opinion from CHMP, the European Medicines Agency's (EMA) committee responsible for human medicines.
The PREFER Recommendations in brief
Want to know why, when and how PREFER recommends that pharma, regulators, HTA bodies and payers assess and use patient preferences in medical product decision-making? In this brief, we explain when and why results from patient preference studies can inform decision-making. We also describe how the PREFER framework should be used, how to involve key stakeholders, how to pick a method for your research questions, explore how participants’ psychological characteristics may offer important insights into preference heterogeneity, and how educational materials can support patients’ understanding. Or in brief, a plain language summary of the reason why we think structured patient input can improve medical product decision-making.
Want a summary of what we have published?
PREFER looks at how and when it is best to perform and include patient preferences in decision making during the medical product life cycle. We include patient stakeholders at every level of the project. The end-result will be recommendations to support development of guidelines for industry, Regulatory Authorities and HTA bodies.
Want to know what we have published so far? In this pdf booklet, you will find a list of our publications with abstracts and links to full text.
The booklet was updated on September 23, 2021..