Parkinson’s Health Equity in R&D - Community Leaders Board

Summary

UCB leveraged long-standing relationships with Parkinson’s UK, The Michael J. Fox Foundation and The Parkinson’s Foundation to develop solutions to help improve diversity in clinical trials.

The project aimed to reduce inequities in care and clinical outcomes. Collaboration with Egality Health (UK) and BlackDoctor.org (US) enabled the recruitment of an inclusive Community Leaders Board of 12 influential voices from the Parkinson’s community, including clinicians, patients, caregivers and community leaders from the UK and US.

The Board co-developed five community-driven solutions strengthening UCB’s commitment to equitable research and trust-building with under-represented populations.

Finding the right partners

UCB built the collaboration on existing long-standing relationships. An initial meeting with patient organisations aligned on the vision and aims of the Board. Candidate identification followed patient organisation recommendations and targeted research by Egality Health and BlackDoctor.org.

Rigorous selection ensured representation from Black African, Caribbean, and Hispanic populations in the US, and Pakistani and Indian communities in the UK. The Board’s success was rooted in inclusive design, shared governance, trust-based collaboration, and integration of lived experience at every stage. 

Three critical enablers were identified

• Diverse representation in the board 
• Meaningful relationships and removing hierarchy 
• Innovative co-created solutions.

Making contact

Goals and objectives were agreed with patient organisations at the start. Each board member was offered an onboarding session outlining programme objectives, expectations and engagement principles. Members completed a survey on ‘what they would like to see from the Board’. Responses were developed into a joint vision and key success factors, discussed and signed off by all members during the first meeting. 

“As a Board, we will forge meaningful partnerships with, and be steadfast allies to, all our patients and communities worldwide. By working together, we will foster a deep understanding of the social factors that affect health and lack of representation in clinical trials. With a focus on developing and recommending practical action plans for UCB to deliver measurable change and sharing our learnings, we will lay the groundwork for science and trials that reflect the disease prevalence in various communities”.

Contracting

Fair and compliant contracting was factored in at the outset. Fee-for-service agreements were established with all stakeholders, including individual patients and caregivers, HCOs, HCPs and PAG representatives. For PAGs, existing Master Consultancy Agreements helped accelerate the process. Honorarium terms were based on fair market value (FMV), based on each individual’s seniority, expertise and country of residence. Early submission of biographies for HCPs and patient community members helped ensure accuracy in FMV.

Programme delivery and outputs

The programme was delivered over five structured meetings held between February and September 2025.

1. Introductions, shared vision and success metrics.

2. Evidence reviews and identification of systemic barriers to agree on two priority topics to focus solution development.

3–4. Co-creation of five actionable solutions, through a ‘pitch and enhance’ process where members brought ideas to the group, which were discussed, prioritised and developed in break-out groups.

5. Reflection and evaluation of progress. This iterative, collaborative approach fostered trust and ensured solutions were practical and community-driven. The partnership delivered five actionable solutions:

How can UCB design inclusive studies?

• Community Leader Training – upskilling members of the community to work with clinical trial teams on trial design. 
• Community Listening Sessions – held in the community to gather insights on designing accessible and acceptable clinical trial protocols. 
• Trial Co-Design Programmes – long-term programme to upskill communities and clinical study teams on designing clinical trials together.

How can UCB increase knowledge about R&D and clinical trials among under represented and under-served communities?

• Community-Developed Video Content – shared through community ambassadors to raise awareness and trust in clinical trials. 
• Outreach and Educational Events – including presentations and supported community delegations at conferences to promote community engagement and highlight the value of research.

Two solutions are under active discussion with a Clinical Development Team for potential integration into a Phase 2b study in Parkinson’s. These approaches are being expanded beyond Parkinson’s disease to unlock their value across additional therapeutic areas. The long-term impact lies in scalability: the approaches can be adapted across multiple therapeutic areas, setting a new standard for inclusive research.

Feedback highlights:

• 100% of Board members agreed that discussions were inclusive.
• 82% of Board members reported increased understanding of representation in clinical trials.
• 82% of Board members expressed confidence that UCB will apply insights to future trials. 

Top tips

• Start with clear shared goals and success metrics. 
• Invest in trusted partnerships to reach underrepresented communities.
• Factor in compliance timelines early to avoid bottlenecks. 
• Treat diversity as a strategic imperative, not a checkbox. 

Job bag details : GB-OT-2600002 - Date of preparation January 2026