The patient perspective

PREFER looks at how and when it is best to perform and include patient-preference in decision making during the drug 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.

Isabelle Manneh-Vangramberen, ECPC

The patient voice in preference research

Patient organisations provide a strong and united patients’ voice, placing patients at the centre of EU Health policy and the forefront of research programmes. Through various Innovative Medicines Initiative (IMI) projects, including PREFER, patient advocates voices have become increasingly present in all aspects of drug development: from fundamental research to regulatory aspects, pricing and reimbursement decisions at the EU-level.

Isabelle Manneh Vangramberen, Pharmacist, Public Health Professional, EU Expert and a patient advocate at the European Cancer Patient Coalition (ECPC), leads patient input through the PREFER patient stakeholder advisory group. Here, she shares the patient perspective and her view on how it is represented in PREFER.

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Irina Cleemput, KCE, public co-lead for recommendations

Patient preferences through a public eye

For patient preferences to be useful in decision-making processes, they have to be measured in a valid and reliable way. However, to be successful, the methods recommended by PREFER also have to be user-friendly and affordable.

Apart from risk-benefit balance of treatments, HTA has many more additional considerations when preparing for a reimbursement decision. Here, Irina Cleemput, public co-lead for recommendations, shares the HTA perspective and her view on how it is represented in PREFER.

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Bennett Levitan, Industry lco-ead for methodology work

Patient preferences in healthcare decision-making

There is a growing movement in the pharmaceutical industry, putting focus on the patient experience. The PREFER project is part of this movement. In a recent issue of CenterWatch Weekly, Bennett Levitan explains patient preference research and how PREFER intends to play a role.

Bennett Levitan is private co-lead for PREFER’s work on methodology. In an interview with CenterWatch, he describes how patient engagement is growing.

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Jorien Veldwijk, Academic co-lead WP 3

Willingness, preferences and medical products

What is it that makes patients decide to accept a treatment with serious side effects? And what would make them say no? Jorien Veldwijk explains how Discrete Choice Experiments can help find out what patients prefer.

Jorien Veldwijk is an expert in Discrete Choice Experiments, or ‘DCE’s” as they are often called. Her PhD thesis used DCE’s to look at preferences for and willingness to participate in different public health interventions. DCE’s are one of the methods that the PREFER project will look at. This method makes it possible to find out how people weigh benefits and risks against each other. She is public co-lead for PREFER’s clinical case studies, where the methods selected by the project will be tested in different patient groups.

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Karin Schölin Bywall, PhD Student, Uppsala University

PREFER PhD project on rheumatoid arthritis

In March this year, Karin Schölin Bywall started her PhD studies at Uppsala University. Her project is part of PREFER. It will look at how rheumatoid arthritis patient preferences can add value when regulators make decisions on drug development.

According to Karin Schölin Bywall, the PREFER project offers the chance to work with PhD students from other universities. PREFER also allows her to develop research questions with senior researchers from universities and the pharmaceutical industry. This collaboration also ensures stakeholder perspectives in her PhD project.

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Finding out what patients prefer

Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle (PREFER) is a five year public-private research project where academic researchers, HTA, patient organisations, and the pharmaceutical industry work together to find out when and where patients want, can, and should be involved in drug development.

We are looking forward to sharing our findings with you!

Mats G. Hansson, Uppsala University, Coordinator
Conny Berlin, Novartis, Project Leader

Mats G. Hansson, co-ordinator & Conny Berlin, project leader, PREFER