Testing preference elicitation methods in clinical case studies
Our researchers will test different methods for preference elicitation in clinical case studies. We will evaluate what patients think is relevant about their disease and its impact. We will look at which treatment options they prefer and their willingness to accept trade-offs between benefits and risks of their treatment. These methods will be evaluated at different decision points in the drug development process.
We are running clinical patient preference case studies in three disease areas, involving both patient partners and clinical research partners in the PREFER project: lung cancer, rheumatoid arthritis and neuromuscular disorders. PhD students working in the project and partners from the pharmaceutical industry provide an additional eight more patient preference studies covering preferences for different kinds of treatment for haemophilia, rheumatoid arthritis, diabetes, multiple myeloma, chronic obstructive pulmonary disease, chronic pain and myocardial infarction. We are also using eye-tracking techniques to see how patients respond to a preference study using a methodology called discrete choice experiments (DCE).
Want to learn more? have a look at our case study catalogue. And if you want to know more about how we use different terms in PREFER, have a look at our glossary. We are also making an effort to summarise case study results in plain language.
Our core case studies
The PREFER project is running three large clinical patient preference studies in three disease areas: Lung cancer, neuromuscular disorders and rheumatoid arthritis.
Lung cancer
Identifying and evaluating which elements are relevant for patients and should be considered when evaluating treatment.
Neuromuscular disorders
Exploring met and unmet health needs of patients and caregivers to identify future treatment needs.
Rheumatoid arthritis
Asking siblings, children and members of the general public about their preferences for preventive treatments for RA.
Case studies by PREFER partners
PREFER partners are contributing data from patient preference studies they have conducted outside the framework of the project. In addition, our PhD students are running their own preference studies as part of their thesis work. Alongside, some of the pharmaceutical companies involved in the project are doing their own studies to explore PREFER research questions. Together, these eight contributions from our partners will contribute to robust and evidence-based recommendations!
Chronic Obstructive Pulmonary Disorder (COPD)
Showing the importance of alleviating symptoms.
Chronic pain
Collaborating on the development of novel treatment.
Diabetes
Exploring preferences and trade-offs diabetes patients make when selecting their glucose-monitoring device
Rheumatoid arthritis
Exploring the trade-offs patients are willing to make, to support clinical and regulatory decisions
Multiple Myeloma
Understanding how patients trade off between the benefits and risks of multiple myeloma treatments
Myocardial infarction
Exploring if preferences for a patient-centered assessment of suitale treatment options differ for patients with acute or chronic disease.
Haemophilia
Exploring how different features influence patients’ choices between standard therapy and gene therapy.
Plain language summaries
Want to know more about our case studies but not completely comfortable with the preference research lingo?
Find out what we have published so far!
We are publishing our results in reports and scientific journals.
People conducting clinical case studies
Work on clinical case studies is done by researchers from universities and industry together with patient organisations and HTA bodies. We have a large group of researchers contributing to PREFER case studies, supported by patient organisations.
Our case study portfolio is big, with three core clinical patient preference case studies. PREFER partners are also contributing data from patient preference studies they have conducted outside the framework of the project. In addition, our PhD students are running their own preference studies as part of their thesis work. Alongside, some of the pharmaceutical companies involved in the project are doing their own studies to explore PREFER research questions. Together, these eight contributions from our partners will contribute to robust and evidence-based recommendations! The work is led by University Medical Centre Utrecht and Merck Sharp & Dohme together with Uppsala University and Pfizer, but we consider this a group effort!
- Ardine de Wit, University Medical Centre Utrecht, Public lead for case studies
- Cathy Anne Pinto, Merck & Co., Inc., Kenilworth, New Jersey, U.S, private lead for case studies
- Jorien Veldwijk, Erasmus Medical Center, public co-lead for case studies
- Leo Russo, Pfizer Worldwide Epidemiology Department, private co-lead for case studies
CLINICAL CASE STUDY LEADS
PREFER is planning three clinical patient preference case studies covering Rheumatoid Arthritis, Neuromuscular Disorders and Lung Cancer.
- Karim Raza, University of Birmingham, Lead for rheumatoid arthrits case study
- Larissa Valor Méndez, Friedrich-Alexander University Erlangen-Nürnberg, Lead for Rheumatoid Arthritis case study
- Grainne Gorman, Royal College of Surgeons in Ireland (RCSI), Lead for neuromuscular disorders case study
- Cecilia Jimenez-Moreno, Newcastle University, Lead for neuromuscular disorders case study
- Serena Oliveri, European Institute of Oncology (IEO), Lead for lung cancer case study
PATIENT REPRESENTATIVES IN CLINCIAL CASE STUDIES WORK
The patient representation in the PREFER clincial case studies is led by Muscular Dystrophy UK (MDUK), together with the European Cancer Patients Coalition (ECPC).
- Antonella Cardone, European Cancer Patient Coalition, ECPC
- Charis Chirvalaki, European Cancer Patient Coalition, ECPC
- Jenny Sharpe, MDUK
RESEARCHERS WHO ARE DOING THE WORK
- Ulrik Kihlbom, Uppsala University
- Karin Schölin Bywall, Uppsala University
- Jennifer Viberg Johansson, Uppsala University
- Karin Groothuis-Oudshoorn, Uppsala University
- Ardine de Wit, UMC Utrecht
- Ian Smith, UMC Utrecht
- Esther de Bekker-Grob, Erasmus University Rotterdam
- Jorien Veldwijk, Erasmus University Rotterdam
- Bas Donkers, Erasmus University Rotterdam
- Chiara Whichello, Erasmus University Rotterdam
- Maureen Rutten-van Mölken, Erasmus University Rotterdam
- Vikas Soekhai, Erasmus University Rotterdam
- Isabelle Huys, Katholieke Universiteit Leuven
- Rosanne Janssens, Katholieke Universiteit Leuven
- Gwenda Simons, University of Birmingham
- Karim Raza, University of Birmingham
- Marie Falahee, University of Birmingham
- Larissa Valormendez, University of Erlangen
- Matthias Englbrecht, University of Erlangen
- Ketti Mazzocco, European Institute of Oncology
- Gabriella Praveltoni, European Institute of Oncology
- Giulia Marton, European Institute of Oncology
- Laura Vergani, European Institute of Oncology
- Paolo Guiddi, European Institute of Oncology
- Dario Monzani, European Institute of Oncology
- Serena Oliveri, European Institute of Oncology
- Ilaria Durosini, European Institute of Oncology
- Geert Vander Stichele, MindBytes
- Sarah Verschueren, MindBytes
- Michelle Luypaert, MindBytes
- Klevisa Ceka, European Cancer Patient Coalition
- Aina Laura Errando, European Cancer Patient Coalition
- Juan Jose Ventura, European Cancer Patient Coalition
- Charis Girvalaki, European Cancer Patient Coalition
- Cecilia Jimenez Moreno, Newcastle University
- Grainne Gorman, Newcastle University
- Alasdair Blain, Newcastle University
- Albert Lim, Newcastle University
- Christine Dyer, Newcastle University
- Julie Murphy, Newcastle University
- Lyndsey Butterworth, Newcastle University
- Robert McFarland, Newcastle University
- Irina Cleemput, Belgian Health Care Knowledge Centre
- Kate Adcock, Muscular Dystrophy UK
- Sheila Dickinson, Novartis
- Monika Borchert, Novartis
- Plamen Kozlovski, Novartis
- Florian Gutzwiller, Novartis
- Susan Talbot, Amgen
- Carmit Strauss, Amgen
- Stephen Heaton, Bayer
- Martin Gebel, Bayer
- Agnes Pulvermüller, Bayer
- Gunnar Brobert, Bayer
- Inge Lise Nielsen, Bayer
- Pooja Merchant, Bayer
- Antje Tockhorn, Eli Lilly
- Christine A Radawski, Eli Lilly
- Kristin Bullok, Eli Lilly
- Bennett Levitan, Janssen
- Eva Katz, Janssen
- Rachael DiSantostefano, Janssen
- Zhong Yuan, Janssen
- Ellen Janssen, Janssen
- Tarek Hammad, Sanofi
- Juhaeri Juhaeri, Sanofi
- Vaishali Patadia, Sanofi
- Stephanie Tcherny-Lessenot, Sanofi
- Hilke Kracker, Actelion Pharmaceuticals
- Leo Russo, Pfizer
- Stephen Watt, Pfizer
- Eline van Overbeeke, Pfizer
- Cathy Anne Pinto, Merck, Sharpe & Dome
- Emuella Flood, AstraZeneca
- Heiko Götte, Merck KGaA
- George Quartey, Roche
- Dasha Cherepanov, Takeda
- Kawaldip Sehmi, International Alliance of Patient Organisations
- Sonja Potenze, International Alliance of Patient Organisations