Research identifies critical barriers and proposed solutions for a more inclusive and representative future; first-in-a-series of expert insights to be shared on new content hub featuring a broad spectrum of Health Equity, Diversity and Inclusion topics
Parexel, a leading global clinical research organization (CRO), today announced the release of “Discussions on Diversity,” an in-depth research report and interactive microsite featuring patient, academic and physician voices highlighting the importance of diversity in clinical trials. The report, issued in conjunction with International Clinical Trials Day, represents a combination of qualitative and quantitative data reflecting perspectives from respondents around the world and identifies critical barriers to achieving diversity in clinical research while offering specific solutions to help ensure more equitable access for Black, Latinx, Asian and Indigenous communities.
The “Discussions on Diversity” report surveyed 1,945 respondents across a broad range of racial and ethnic groups in the United States, Canada, United Kingdom, Australia, France, Hungary, Italy, Mexico, Poland and Spain. Qualitative insights were gleaned from one-on-one interviews in the United Kingdom and the United States and physician focus group sessions in the United States and Canada as well as Parexel’s Patient Advisory Council meetings in the United States, Italy, Australia and the United Kingdom.
“Our society is not homogenous; hence a one-size-fits-all approach is not appropriate. This is particularly true when it comes to such important and sensitive issues as health and the design of clinical trials and research approaches in order to optimize outcomes for all stakeholders,” said Malini Raj, Non-Executive Director of the Australian Pituitary Foundation and a patient research participant. “This diversity in clinical trials research is a needed and important step to shine a light on the structural issues and ensure that there is greater awareness of the need for increased ethnic diversity in clinical trial participation. However, it also goes one step further in that it provides consistent insights which highlight some of the key barriers precluding clinical trial participation that can be addressed or further explored to allow participation to be truly reflective of the community in which we live.”
Key takeaways from “Discussions on Diversity” include:
- The needs and preferences of patients, caregivers and communities must be carefully considered during study planning to ensure they address potential barriers to participation. The disease in question and the daily challenges it brings have a huge impact on how home or community-based strategies are deployed. Decentralized trials, in particular, can help improve patient access to and experiences in clinical research.
- Building trust is critical to engage in clinical research. Many patients expressed mistrust and skepticism around trial participation, often attributed to negative historic events and a lack of cultural sensitivity from the healthcare team.
- Practical barriers pose major challenges to trial participation, regardless of race and ethnicity. Top concerns include financial issues, sufficient translation of trial information materials, childcare and transportation.
- Physicians expressed a low expectation for COVID-19 vaccine trial participation from diverse communities, as well as anticipated low vaccine uptake, especially among the Black and African American communities, based on previous experience with flu vaccinations. The COVID-19 pandemic has created a spotlight on disparities in research access and placed a strong emphasis on diversity, presenting an opportunity to drive real change.
- Research participants shared that there is a degree of stigma around illness in some communities, which is viewed as a contributing reason for lower levels of research participation.
- Receiving treatment from site staff of the same race, ethnicity or cultural background was highlighted as important by many research participants.
“Now, with a broadened perspective and greater understanding of the critical areas to address, we invite our industry colleagues to reflect with us on diversity practices and identify opportunities to improve engagement with sites and patients from different racial and ethnic communities,” said Clare Grace, PhD, Chief Patient Officer for Parexel. “By putting patients first, we have a clear opportunity to enhance research access for everyone.”
The “Discussions on Diversity” report is part of a series of expert insights to be shared on Parexel’s content hub featuring a broad spectrum of Health Equity, Diversity and Inclusion topics. As the next phase of the initiative, Parexel will further build out this interactive knowledge hub to serve as the industry resource for a broad range of topics, from gender to gender identity to socioeconomic status and more.