Patient preferences to be considered more important in the development of new drugs

The PREFER project has created recommendations on how best to include patient’s perspective in drug development decision- making, to better serve the muscular dystrophy community.

PREFER was a six-year project that aimed to outline the importance of using patient preferences in medical decision making, from drug development all the way to marketing, alongside clinical results.

Now at its end, the PREFER project has published its long-awaited recommendations for pharmaceutical companies, developers, regulatory bodies and other involved parties.

The recommendations allow for a more personal approach to drug discovery and medical product marketing by factoring in patients’ considerations alongside other forms of evidence-based data.

The project found two specific areas where patient experiences will be particularly valuable:

1) The assessment of the benefits and side-effects of a new treatment, and how much they affect the patient’s life. 

2) The willingness to accept the benefits of a new treatment outweigh certain side-effects and risks that may occur.

The PREFER Recommendations also advise on the best and most effective methods of gathering patient preference information in line with the purpose and objectives of the medical study, as well as the budget, time, stakeholders’ acceptance and more.

Thanks to the guidelines, partners from pharmaceutical companies said patient experience is becoming more embedded in their work, meaning the people who use the treatments most will be taken into consideration from the very start of the process.

This is a huge step forward for people living with muscular dystrophy and other muscle wasting conditions, and MDUK has recognised the importance of giving a voice to patients who rely on developed medicines the most since the project launched in 2016.

MDUK helped researchers at Newcastle University who led patient preference studies of people with neuromuscular conditions, with a focus on myotonic dystrophy type 1 and mitochondrial disease, in order to give the community a voice.

We would like to thank everyone who took part in the studies, as well as those who worked closely with the PREFER team and provided their valuable advice. Visit the PREFER website here.

If you'd like to read more about the recommendations, you can view them in brief here or read the full document here.