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.
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.
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.
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.
- Data management in PREFER 2017-07-05
- PREFER annual meeting 2017 2017-07-05
- Patient preferences in healthcare decision-making 2017-05-16
- PREFER PhD project on rheumatoid arthritis 2017-04-06
- Editorial in Patient: Giving patients’ preferences a voice in medical treatment life cycle 2017-03-16
- New research initiative on patient preferences 2016-11-16
We are developing evidence-based recommendations to guide industry, regulatory authorities, HTA bodies, reimbursement agencies, and health care professionals. We start with work to assess methodologies. After that, we test them in clinical case studies. This work will be the basis for the recommendations we make.
Together with stakeholders
PREFER is a public-private partnership with collaboration at every level, making sure we get more than one perspective on everything we do. We have stakeholder partners from Health Technology Assessment bodies and patient organisations. We are also working closely with regulators to ensure recommendations are evidence based, relevant and useful.
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.
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
Innovative Medicines Initiative
PREFER is funded by the Innovative Medicines Initiative (IMI): a part of the EU Horizon 2020 Programme.
The academic research in PREFER is funded by Horizon 2020: the EU Framework Programme for Research and Innovation.
The pharmaceutical industry contributes equally to the PREFER project. Industry input to the IMI programme is organised by EFPIA.