Overview

Egality supported a global pharmaceutical company in establishing and facilitating a ‘Health Equity in R&D Community Leaders Board’ across the US and UK. 

The Board brought together 14 members, including individuals with lived experience as patients and caregivers, community advocates, clinical trial professionals, and patient advocacy group representatives. The sessions were chaired by Health Equity Strategist and Expert, Dr Sharon Allison-Ottey, MD. 

Egality’s role included: 

• Recruitment and on-boarding 14 Board members across US and UK
• Developing close working relationships with patient advocacy groups such as Michael J. Fox Foundation for Parkinson’s Research, Parkinson’s UK, and Parkinson’s Foundation who were part of the Advisory Board
• Designing an innovative methodology to leverage the Board’s lived and learned expertise across the five virtual meetings
• Maintaining consistent engagement with Board members and cross-functional company teams through regular communication, feedback loops, and update meetings
• Developing detailed implementation plans for five solutions co-created with the Board

Outputs

Egality collaborated with Board members and the pharmaceutical company to deliver the following: 

• Regular communications, including pre- and post-meeting summaries and action lists for all five Board meetings shared with partners including senior leaders
• Detailed implementation plans for five co-developed solutions, outlining solution overviews, estimated budgets, timelines, and key partners to involve across teams
• Summary slide decks to support internal discussions and enable the organisation to socialise the proposed solutions across teams
• A Patient Focused Medicine Development (PFMD) survey to assess engagement and feedback from Board members

Being part of this Advisory Board has been an incredible enriching experience. I’ve learned that collaboration between professionals, patients, care partners, and advocates is valuable and essential.
– Feedback from one of the members

Patient Engagement

To ensure effective and positive patient engagement, Egality developed a post-meeting survey aligned with on the Patient Focused Medicine Development (PFMD) criteria. Feedback from Advisory Board members reflected consistently strong experiences:  

• 100% of participants agreed or strongly agreed that they were approached with respect and openness when invited to participate, and that the contracting and consent information was clear and easy to understand
• 100% of participants agreed or strongly agreed that they were provided with a dedicated point of contact and sufficient information before the session to feel prepared, supported, and comfortable raising questions or concerns
• 100% of participants agreed or strongly agreed that the Advisory Board sessions were facilitated inclusively, valued diverse experiences, and created space for all voices to be heard
• 100% of participants agreed or strongly agreed that they were confident the company would consider the insights shared during the sessions when designing clinical trials 
• 82% of participants agreed or strongly agreed that participating in the Advisory Board increased their understanding of how to improve representation of communities in clinical trials

These results reflect the strength of Egality’s collaborative approach, ensuring Board members felt respected, informed, and able to contribute meaningfully to shaping more equitable clinical research.  

It has been a privilege to participate with members from such a huge diverse community this has enabled us all to learn so much. The support team (Egality) has been very helpful, supportive, and friendly.
– Feedback from one of the members living with Parkinson’s

Outcomes

The outcomes expected from this work include: 

• Improved recruitment, representation, and retention of underrepresented communities in clinical trials
• Authentic, experience-driven insights from patients, caregivers, community advocates, and clinical trial professionals to inform research practices
• Solution-driven action plans enabling the company to translate health equity commitment into tangible operational changes
• High quality engagement assessed using the PFMD Patient Engagement Quality Criteria

Together, these outcomes demonstrate how structured, community-centred engagement can strengthen equitable research practices and inform more inclusive clinical trial design.