Overview

Egality partnered with a global top-10 pharmaceutical company’s ‘Patient Engagement’ and ‘New Product Planning’ teams to design and deliver in-depth patient councils. The aim was to explore the lived experiences and perspectives of people living with endometriosis who have been offered or received treatment options. The overarching aims were to capture their diagnosis journey, treatment, decision-making, the broader impact of the condition on their daily lives, and what they would benefit from in terms of treatment. 

The insights gathered will inform a target patient value proposition and build the evidence base supporting a business case for potential clinical trials of a new treatment for endometriosis. By grounding these considerations in patient voices, the aim is to ensure that the company’s work remains closely aligned with real-world needs and priorities of the people it seeks to serve.  

Outputs

The Patient Councils were facilitated virtually, as semi-structured focus groups. Egality delivered two focus groups with 8 participants in the US and focus groups with 7 participants across the UK. An additional 1:1 session was held with 1 participant.

To support the clinical study team, Egality delivered the following outputs:

• A detailed insights spreadsheet capturing key themes, quotes from participants, and discussion summaries
• A comprehensive written report, including an executive summary, an overview of each discussion theme, and detailed insights on each sub-theme, illustrated with direct quotes from participants
• A summary deck, presenting the insights from the report and spreadsheet in a visual manner and for easy sharing within the company
• A read-out meeting presentation, to share the findings with cross-functional stakeholders, using graphs, word clouds, quotes, and audio clips from the focus groups to illustrate the extensive wealth of insights gathered
• A lay summary for participants to share the insights gathered and highlight what we heard across focus groups

This was such a beautiful experience, and I am so happy I got to play a role in sharing my experience with this awful condition. Learning more about this disease and being sent links to resources was invaluable. I truly gained so much from this focus group. I absolutely felt safe, seen and valued. Thank you!

~ Participant 6 | Black | US

Patient Engagement

To ensure effective and positive patient engagement, Egality developed a post-meeting survey aligned with the Patient Focused Medicine Development (PFMD) criteria. Feedback from participants demonstrated high levels of satisfaction and trust in the process

• 94% of participants agreed or strongly agreed that they understood how their insights would be considered by the pharmaceutical company in designing the clinical trial.
• 100% of participants 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 strongly agreed that the Patient Councils were facilitated in an inclusive manner that valued diverse experiences and created space for all voices.
• 100% of participants strongly agreed that their experience in these focus groups made them interested in staying involved in future advisory roles or follow-up opportunities with the company

Everyone facilitating the focus group sessions were kind, respectful and professional. Thank you for showing us the respect and kindness we don’t often receive! 

~ Participant 10 | UK | White British

These results demonstrate the success of Egality’s patient-centred approach, ensuring that participants felt respected, informed, and supported in contributing meaningfully to trial design.

Outcomes

The findings gathered during this project will:

• Inform the target patient value proposition, leading to patient-centric research and development based on real-world patient unmet needs
• Enhance the overall literature on patient experiences and patient needs within endometriosis
• Ensure the patient voice is at the centre of all future trials or clinical research, making them relevant, accessible, and inclusive

It was a great opportunity to share my experience and hear from other people too. It’s important for me to know that there are people interested in making our lives better.

~ Participant 11 | UK | Brazilian