Malini Raj is a patient advocate, Non-Executive Director of the Australian Pituitary Foundation and member of the World Alliance of Pituitary Organizations. Malini is a strong patient advocate for Cushing’s disease, since she is a patient herself, diagnosed in 2013 after a 20-year journey to diagnosis.
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.
Society as we know it is extremely ethnically diverse and multicultural. Each of these minority groups have specific needs, views, opinions and cultural nuances which shape the way they interact, react or engage in society and how they are impacted. These unique characteristics need to be considered, acknowledged and incorporated to ensure these groups are adequately represented in clinical research. As a patient from an ethnic minority group, I commend Parexel for their efforts in acknowledging the need for more diversity in clinical trials and research, and for using a multipronged approach to thoroughly understand the critical barriers that seem to be precluding adequate diversity in trials that is reflective of society.
It is refreshing to see this report has successfully drawn out some very key issues that may be contributing to the lack of diversity in clinical trials, such as awareness. Identification of the issues is the first step to making change.
From my perspective, some highlights that resonate include:
- The need for open communication and dialogue with ethnic minorities to address the lack of trust and improve understanding of the purpose and process of the trial
- The recognition of the need for strong collaboration, using trusted sources in the community to act as a bridge and leveraging relevant communication channels and formats
- The imperative to take the time to recognize and respect cultural nuances and cultural stigmas and stereotypes centered around health, the importance of family and community, and who needs to be involved in the decision-making process
- Acknowledgement of financial and physical limitations that may not be present in the mainstream population and being open to considering other locations or centers that may allow a greater diversity of participants
- Recognition that support, education and awareness need to be focused not only on potential patients / participants but also the physicians/clinicians, and an understanding by each party as to the important role they can potentially play in positive clinical trial representation and outcomes
As a patient, I would appreciate it if any or all of the above, is always kept front of mind, as it will allow greater empathy, cultural competency and understanding among those who are designing approaches or engagement strategies for clinical trials, and a greater likelihood for patients like me to be included, to contribute and to have a voice.
This diversity in clinical trials research is a needed and important first 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 that 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.