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Building equity in clinical trials

HPP produced a policy report exploring the barriers to equitable, diverse and inclusive clinical trials for metastatic breast cancer and highlighting opportunities to improve practice.

nurse supporting older female Asian patient

Context

Clinical trials are essential in driving progress across the prevention, diagnosis and treatment of cancer, and can hugely benefit participants by giving them access to potentially effective interventions. But there are serious inequities in where clinical trials take place and who is able to participate. This can perpetuate existing health inequities, including those in metastatic breast cancer.

Global inequities in health systems extend to clinical trials. Many of the barriers that prevent people from accessing quality healthcare can also limit their ability to participate in research.

When the study population in clinical trials is not representative of the people living with a particular condition, as is often the case for metastatic breast cancer, this can perpetuate existing health inequities. For example, it may limit our understanding of how interventions affect people with different characteristics, potentially resulting in the inappropriate design or delivery of future treatment plans. It is essential that we acknowledge and confront the barriers to receiving best-practice care to improve outcomes in cancer.

Action is needed at multiple levels to improve health equity and clinical trials have a key role to play. By working to enhance equity, diversity and inclusion in clinical trials – from early in the development process through to recruitment and participation – research can be more inclusive and representative, for the benefit of all.

Project resources

Policy report

Policy report

Inclusion by design: building equity in clinical trials through the lens of metastatic breast cancer

What we’ve achieved

HPP sought to understand some of the major barriers to equity, diversity and inclusion in clinical trials and how they might be addressed, drawing on examples from metastatic breast cancer. We brought together clinicians, researchers and people with experience of metastatic breast cancer to form a global, multidisciplinary steering committee that would guide us in this work. We also carried out extensive desk research and conducted interviews to gain further expert insight.

On Clinical Trials Day in May 2023, we launched a policy report outlining 16 actionable recommendations to improve the inclusivity and diversity of clinical trials. The report calls on regulators, trial sponsors, and those designing and conducting clinical trials to act across three priorities:

  • achieving more inclusive data collection, analysis and reporting
  • designing more inclusive clinical trials
  • embedding more inclusive practices in trial access and participation.

It is our hope that this work will help to improve practices that deliver more inclusive clinical trials, leading to better outcomes for everyone living with cancer.

In November 2023, we developed and presented a poster based on this project at the Advanced Breast Cancer Seventh (ABC7) International Consensus Conference, hosted by the ABC Global Alliance in Lisbon, Portugal.

Key partners and stakeholders

Steering committee members:

  • Michael Camit, Adjunct Fellow, University of Technology Sydney, Australia
  • Alexandru Eniu, Senior Medical Oncologist, Hôpital Riviera-Chablais, Switzerland
  • Oluwadamilola ‘Lola’ Fayanju MD, Helen O. Dickens Presidential Associate Professor and Chief, Division of Breast Surgery, University of Pennsylvania, US
  • Renate Haidinger, Patient Representative and Director of the General Assembly, ABC Global Alliance, Germany
  • Luciana Holtz de Camargo Barros, Founder and President, Instituto Oncoguia, Brazil
  • Shavez Jeffers, Community Engagement Officer, The Centre for Ethnic Health Research, University of Leicester, UK
  • Maimah Karmo, Founder and CEO, Tigerlily Foundation, US
  • Sonya Negley, Executive Director, METAvivor, US
  • Eva Schumacher-Wulf, Patient Representative and Editor in Chief, Mamma Mia!, Germany
  • Louise Sinclair, Patient and Consumer Representative, Breast Cancer Network Australia, Australia

Interviewees:

  • Fatima Cardoso, Director of the Breast Unit, Champalimaud Clinical Center/Champalimaud Foundation, and President of the ABC Global Alliance, Portugal
  • Sheetal Challam, Multicultural Strategic Advisor, Cancer Institute of New South Wales, Australia
  • Ricki Fairley, CEO, TOUCH, The Black Breast Cancer Alliance, US
  • Iris Karry, Manager, Patient Education and Research, Colorectal Cancer Canada, Canada
  • Katie Robb, Professor of Behavioural Science and Health, University of Glasgow, UK
  • Susannah Stanway, Medical Oncologist, Co-founder and Board Member, UK Global Cancer Network and London Global Cancer Week

Project funding

This project was initiated and funded by Sanofi. Funding was provided to The Health Policy Partnership (HPP) for project preparation and management, research, drafting and coordination. This work was guided by a multidisciplinary steering committee and interviews with expert stakeholders. All members of the steering committee were offered payment by Sanofi to support their involvement. Experts who participated in an interview were not financially compensated for their time. HPP worked to deliver project outputs that represent a consensus position from the steering committee, but retained editorial control.

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