Prize for work ensuring patient voice is included in research

This partnership between Parkinson’s UK, pharmaceutical company UCB and the Parkinson’s Foundation has been granted the award for the work of an initiative called the Patient Engagement Council for Parkinson’s Research (PECPR). The awards recognise and celebrate individuals and organisations who are advancing patient engagement in healthcare.

Since 2021, the Patient Engagement Council for Parkinson’s Research has been working to amplify the voices of people with Parkinson’s in clinical research. The group is made up of 5 people with Parkinson’s, alongside representatives from UCB, Parkinson’s UK and the Parkinson’s Foundation.  Its aim is to ensure that people with Parkinson’s are involved at every stage of drug development, which will result in better treatments for the Parkinson’s community and more efficient research.

Currently, the PECPR is working on ways to improve communication about drug trials which aim to slow down progression of the condition, as well as making sure that Parkinson’s research is representative of all people living with the condition. The group has also developed a framework which can be used to help pharmaceutical companies consider the value of any drug they are developing to the people who might one day take it.

Read more about the PECPR and its progress in our news story.

The Made with Patients award recognises the outstanding contribution the PECPR has made towards improving clinical research for people with Parkinson’s. It also raises the profile of Parkinson’s research which involves people affected by the condition at every stage, with the hope that more companies will adopt a similar approach.

Marc van Grieken (pictured left) is a patient advocate and member of the PECPR. He was diagnosed with Parkinson’s in 2006. He said:

"The experience with the PECPR demonstrates that patients can make an impactful contribution to prioritisation, planning, and programming of research.  The Council created an open and constructive atmosphere attributing equal weight to the views of everyone participating. PECPR being awarded the Made with Patients award further encourages industry and patient organisations to see us for who we are."

Nikul Bakshi (pictured centre), Research Involvement Lead at Parkinson’s UK said:

"Parkinson's UK is immensely proud of its longstanding partnership with UCB, Parkinson's Foundation and the Parkinson's patient community. Our collaboration via the PECPR, showcases how industry, patient organisations and the patient community can work together towards positively impacting research for the benefit of the Parkinson's community."

Hero photograph by Aurore Delsoir Photography.