UCB’s Patient Engagement Council for Parkinson’s Research
Patients and caregivers are the true experts, which is why at UCB we believe that it’s vital to work with the patient community, involving them at every stage of our research and development, to help ensure better treatments that result in stronger outcomes for patients.
It has become common for patients to be involved in various steps of the drug development process. However, patient communities are often not invited to participate in early research and clinical development. In order to address this, UCB set up the Patient Engagement Council for Parkinson’s Research (PECPR).
What is the Patient Engagement Council for Parkinson’s Research? (PECPR)
The PECPR is a strategic steering group created in 2021 by UCB, The Parkinson’s Foundation, and Parkinson’s UK, with the overall goal to partner consistently with the patient community to improve early research and clinical development.
Integral to the PECPR are five people living with Parkinson’s who represent the wider Parkinson’s community and their perspectives, with a keen interest in early research and development.
What is the overall aim of the PEPCR?
Improve patient outcomes by working together strategically to:
- Co-create a patient-centered model of research and development, leading to more efficient and higher quality research that meets the needs and priorities of people living with Parkinson’s.
- Embed patient involvement into the earliest stages and throughout each step of UCB’s Parkinson’s drug development portfolio, ensuring that decision-making is driven by the priorities of people affected by Parkinson’s.
- Elevate patient engagement within the international Parkinson’s research community, enabling increased opportunities for collaboration and shared learning to advance Parkinson’s research.
Hear more from people living with Parkinson’s who represent the wider Parkinson’s community and their perspectives:
Harold has participated in a two-year trial ‘Parkinson op Maat’ and he is active in several Parkinson’s Forums via social media (e.g. Health Unlocked, Parkinson Net, Reddit, Instagram and Facebook groups). He is also busy helping Radboud MC with funding by using his professional network. As part of his patient outreach work, Harold formed and hosts a ‘Parkinson's Café’, a meeting of people who get together on a regular basis in the region he lives, as well as the Facebook group Parkinson’s Silver Linings, which has now more than 5,000 members worldwide.
Carol was diagnosed with Parkinson’s over 20 years ago and has participated in more than 20 research studies, as a well as having Deep Brain Stimulation. Carol has completed the Parkinson's Foundation Learning Institute Training. As well as serving as a research advocate for the Parkinson's Foundation for over 10 years, Carol has also served on the AGING Initiative Patient/Caregiver Advisory Council and contributed to two years of grant review with the Patient-Centered Outcomes Research Institute.
Vikas was diagnosed with early onset Parkinson's in February 2022. Since then he has focused on Parkinson’s advocacy and promoting awareness within and outside of his community. Vikas is a member of the Parkinson’s Foundation People with Parkinson’s Advisory Council. He lives in San Carlos with his wife, Preeti, and his sons, Bailey and Sammy.
Shah has been a member of Parkinson's UK Patient and Public Involvement (PPI) network since July 2018, following his diagnosis in 2015. Shah has good connections with fellow Iranians who live with Parkinson's and spends much of his time advocating for the community.
Marc was diagnosed with Parkinson’s disease in 2006 at the age of 49. A keen runner, he completed the New York Marathon in 2003, and preparations for his next marathon caused him to seek support for mobility issues, eventually revealing his Parkinson’s diagnosis. 11 years later, Marc decided to turn his energy towards fundraising and advocacy efforts to advance Parkinson’s research. Marc now sees himself as a Parkinson's warrior and campaigner, pushing boundaries, representing the broader Parkinson’s community, lending a voice to the cause, and challenging the status quo.
What has the PECPR achieved so far?
Since its inaugural meeting in September 2021, the PECPR has gathered many invaluable insights from its members. A set of key focus areas to drive impact and value for patient communities was suggested by all the members of the PECPR group. These were then ranked using the Clinical Trials Transformation Initiative (CTTI) to determine the expected impact and resource requirements. After further qualitative exercises, a consensus was reached on three priorities to be built and worked upon:
- Model for target product profiles (TPP) co-creation
- Diversity, equity and inclusion; moving our thinking to take action on our ambitions
- Disease-modifying treatment Please download our PECPR one-pager for more information on the work we have achieved here.
What’s next for the PECPR?
The PECPR is currently evaluating what can be improved upon, such as; enhanced communications and engagement with the wider research community, better utilizing the networks of the PECPR members to gather wider insights into all aspects of our work and publishing more lay papers. We are also evaluating the next topic areas we want to focus on, making sure they address our core needs:
- What is our overall purpose? And which specific actions achieve this?
- Why is it important to focus on this area? How does this help us achieve our overall purpose?
- What specific results will deliver against our purpose?
