• Tolerability is a hot topic in medicines development, and the evaluation of symptomatic adverse events and their overall tolerability has been recommended by the US FDA in oncology, and also recently by the EMA in their draft reflection paper on Patient Experience Data.
• Measurement of tolerability tends to focus only on experiences and overall burden of adverse events, as recommended by the FDA as part of the five core outcome measures in cancer trials.
• IQVIA collaborated with the US Cancer Support Community (CSC) to integrate an online patient survey into their existing Cancer Experience Registry to better understand how people with cancer define treatment tolerability and key factors they consider. Findings from the survey suggest that treatment tolerability is broader than just adverse events.
• This session will function as a discussion – the presenters will provide some background information and results of the survey, with the remaining time dedicated to hearing from participants about how they personally define treatment tolerability, and how it should be evaluated in clinical trials and routine care.

Aude Roborel de Climens, PhD, Director, Scientific Services, Patient Centered Solutions, IQVIA

• The NIHR partners with over 100 charities and community groups when recruiting to its public involvement activities.
• This has increased the numbers, diversity and representativeness of the public who take part in PPIE activities, including the often overlooked ‘research naive’ voice.
• Our challenge is how we continue to develop these partnerships in a fair and reciprocal manner, bringing benefit to all involved.

Emily Pickering, Specialist Commercial Services Lead, Patient Engagement in Clinical Development, NIHR Research Delivery Network
Isabella Darbyshire, Specialist Commercial Services Manager, Patient Engagement in Clinical Development, NIHR Research Delivery Network

• Programs that help build trust and emotional connection with patients and caregivers by integrating the first person experience throughout all educational materials have, in our experience, the most impact, helping to increase understanding, reduce diagnostic delays, and empower patient communities.
• Case study presentation of successful patient-led education examples of highly trusted content across geographies, demonstrating engagement and sponsor value across therapy areas and brands.

Jasmine Malone, Group Director, Content & Storytelling, OPEN Health

Indeemo and Humanly will present how mobile ethnography captures authentic patient experiences to drive healthcare innovation, featuring their work with Asthma + Lung UK’s Innovation Accelerator programme.

• Mobile ethnography methodology and why it delivers unique insights
• 8-week study design capturing real-world usage patterns and context
• Co-analysis approach that democratises research for people with lived experience
• Tangible outcomes and practical implementation for patient-centric innovation

Eugene Murphy, Founder & CEO, Indeemo
Jenni Parker, Founder & Director, Humanly