PARADIGM reports from PREFER annual meeting: Understanding patient preferences – the next frontier in PE

2019-11-04

The PARADIGM project were present at the PREFER annual meeting. Want to know what EPF’s Camilla Habre (Project Officer) and Mathieu Boudes (PARADIGM Coordinator) have to say about PREFER? Here is a short report (originally posted on the PARADIGM blog onm October 31, 2019).

The progress of the PREFER project will lead to broader use of patient preference studies in medicines R&D, write EPF’s Camilla Habre (Project Officer) and Mathieu Boudes (PARADIGM Coordinator) in a short report from the PREFER Annual Meeting 2019 

The area of patient preferences studies is an emerging and strategic topic. It illustrates how an efficient patient engagement approach is key to ensuring patient views are efficiently captured during the many steps of the value chain of drug development. 

Our colleagues from PREFER, the IMI-funded project, are working on case studies to provide a better understanding of what will be recommended as a best practice approach to patient preference studies and how patient preference studies can give valuable information to support decision-making for regulators and HTA bodies.

PREFER held its annual meeting aiming to show the progress of the consortium in October and it also outlined the path forward for the final two years of the project. We at PARADIGM would like to take this opportunity to congratulate them on their achievements.

At this stage in the project, the key activity is to run patient preference studies in several diseases areas and stage of development. The case studies cover areas such as rheumatoid arthritis, lung cancer, neuro-muscular dystrophy, diabetes, and gene therapy in haemophilia.

PREFER initiated the first of its kind parallel EMA-EUnetHTA qualification procedure and has just submitted its briefing book. The qualification of such innovative methods can lead to the development of guidance and can facilitate the inclusion of patient preference studies in development programmes. PREFER submitted a briefing book about the framework that can be used to specify research questions, patient preference study design, conduct, analysis and report when proposing specific patient preference studies with potential to be used to inform the decision-making by stakeholders such as industry, EMA, and HTA bodies. 

PREFER will also address in the coming months the transferability of the results of the preference studies coming from the case studies to other countries, other therapeutic areas, etc. Understanding the elements that facilitate greater transferability of the results will support the broader use of such studies.

Another innovation that PREFER brings is showing how its patient preference studies during early drug development are pivotal to aligning stakeholders to ensure that development plans meet patient needs. This line of work is clearly in synergy with the work being carried out in PARADIGM. On this topic, we encourage all to have a look at this paper published earlier this year by Cook and al in Frontiers showing that ‘the outputs from such early patient preference studies are being used to inform patient-reported outcome strategies, clinical development strategies, product design and delivery features, and form the basis for early dialogue with regulators, health technology assessment (HTA) bodies and payers to ensure focus and alignment on patient-relevant endpoints.

If you want to have a look at what PREFER have published since the beginning of the project, have a look at this page .

Good luck to all partners of the PREFER consortium trying to make patient engagement a greater reality!

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