Quantifying Diversity, Equity and Inclusion in Clinical Trials

Diversity, equity and inclusion (DEI) is a deeply systemic challenge and its significance in clinical trials cannot be overstated. Without proper participation and representation of patients, research cannot truly indicate how treatments will ultimately work for everyone and anyone who needs it. HealthMatch, who aspire to make clinical trials more accessible to patients, first collaborated with Snowmelt in 2023 to collect real-time data from patients to highlight the challenges they experience in engaging with clinical trials and the US health system. In 2025, this partnership continued to expand the work and explore other DEI dynamics faced by patients.

The most important aspect of this project was to amplify the voices of patients to help industry make more informed decisions to improve engagement with patients. Significant effort was put towards ensuring that as many patients and individuals as possible were able to participate in the research, designing the survey and process to be open and accessible. This included engaging industry partners upfront in the process, increased channels for patients and communities to access the survey, multilingual collection of responses, and expanding the explored dynamics to include race and ethnicity, socio-economic factors, sex and gender, caregivers and disability.

‘Quantifying Diversity, Equity and Inclusion in Clinical Trials’ was published in February 2025, and to date is one of the largest patient surveys of its kind globally. Patients and industry partners alike have engaged in follow-up engagement with HealthMatch to continue exploring this work together since the inception of this series. This interest has provided HealthMatch an opportunity to develop a new product offering for sponsors running clinical research, connecting them directly with patients in the trial process to better understand their needs, challenges and experience as they navigate the space.

‘Quantifying Diversity, Equity and Inclusion in Clinical Trials’ was created with an inclusive design process in mind in order to focus on the real and current challenges that patients are facing as they engage with the health system. Unlike other sector initiatives like Patient Advisory Boards that can take months to establish (and even longer to engage with small groups); this research can be completed quickly, scaled, and most importantly, when it is needed to explore what real patients are experiencing in the trial process. It moves as quickly as the markets these companies are serving. This project also benefited from collaboration with industry leaders, Abbvie and GSK - their engagement and insights helped identify the needs and perspective of industry, and shape the project's research and final report. This report series is designed to be industry facing and connect the qualitative and quantitative for a holistic approach and picture of the current landscape. It is based on translating patient perspectives and experiences, into real-time data to identify patterns and opportunities - whilst still connecting to real, complex stories of patients navigating the clinical trial space, and the work that still needs to be undertaken to help them continue doing so.