Clinical trials play a vital role in advancing medical research, developing innovative treatments and improving patient care. But, a major challenge persists in the field: a lack of diversity among participants.
In a 2020 review, the FDA found that out of the 292,537 participants in clinical trials worldwide, 76% were white, 11% were Asian, and 7% were Black. They mapped these numbers against the world population of 7.8 billion people, of which approximately 60% live in Asia, 16% in Africa, 10% in Europe, and 8% in Latin America. Even taking various definitions of race and ethnicity into account, it is clear that the clinical trial participant population is not reflective of the real world.
Diverse participation means medical interventions are evaluated for everyone, regardless of race, ethnicity, age, gender, or socioeconomic background. And recently, we’ve seen growing recognition of the importance of inclusivity and representation in clinical research. Here, we’ll explore some of the easiest ways to improve diversity in clinical trials and drive positive change.
Raising awareness and education is a crucial first step for improving diversity in clinical trials, both for researchers and the general public.
Many people are not aware of their value in medical research or of the importance of the research in general. Others live in communities that have been impacted by historical harms related to clinical research, and have developed a scepticism of the medical system. Spreading the word about the importance of research and patients’ rights is key; targeted campaigns, social media and community outreach can have a powerful impact on encouraging diverse populations to participate in clinical trials.
Patient-facing healthcare professionals can also play an important role in raising awareness of research opportunities within communities of colour. Educating researchers about the benefits of diversity and the potential biases that can arise from homogeneous trial populations can encourage a change in mindset among these HCPs as well.
Engaging with community organisations is another effective way to boost diversity in clinical trials. Community organisations have deep-rooted connections and have often built trust in diverse communities. These groups can help draw attention to clinical trials, address concerns or misconceptions, and reach participants from underserved groups. Working alongside these organisations and fostering relationships with trusted leaders enables researchers to connect with diverse participants and nurture ongoing communication and recruitment.
Sometimes complex trial procedures can be off-putting for participants, especially in underrepresented groups. Streamlining trial procedures is an effective way to make trials more appealing and accessible for participants.
As a starting point, research teams could simplify consent forms, offer translation assistance, provide transportation or childcare support, and consider flexible scheduling. In some cases, clinical trials could be virtual rather than in-person, which removes difficult barriers to participation for many. This opens clinical trials to a wider participant range and helps researchers enhance trial diversity.
Cultural competence means understanding and respecting the cultural backgrounds and values of diverse populations. Clinical trials should ideally be designed and conducted in a culturally sensitive way. This means asking for diverse opinions and perspectives on study design and involving community leaders or advocates from underrepresented groups in the research process. Trial materials must also be culturally appropriate and accessible whenever possible.
Cultural competence ultimately fosters trust and increases the likelihood of participant engagement, with the added bonus of improving overall data quality.
Diverse research teams can also boost clinical trial inclusivity, offering unique perspectives and insights. Actively seeking diversity in research teams can help to identify and address potential biases or barriers to diverse participation.
Developing an inclusive and diverse research environment creates an environment of trust and understanding, which often paves the way to attracting and engaging trial participants from different backgrounds. Some organisations are making this a priority – for example, the Association of Clinical Research Professionals (ACRP) formed a Diversity Advisory Council, a working group dedicated to reinforcing the need for “greater diversity in the clinical trial workforce.”
Making an effort to communicate well with participants and focus on engagement will also enhance diversity in clinical trials. Clear and concise communication from researchers about the purpose, benefits, and risks of the trial is key.
To promote inclusivity, researchers should think about tailoring communication materials to make them more inclusive, as well as using language that’s easily understood and offering language assistance where needed. Innovative patient engagement technology can be a helpful tool to support clinical trial patient retention. Actively involving participants in the trial process, giving regular updates, and seeking feedback helps participants feel valued and can improve overall participant engagement and satisfaction.
Don’t underestimate the power of collaboration; joining forces with various stakeholders, including researchers, policymakers, healthcare providers, patient advocacy groups and pharmaceutical companies, is also key to advancing diversity in clinical trials.
Sometimes this is achieved via steering committees or advisory boards with members from different stakeholder groups. Working together, stakeholders can share best practices, develop guidelines and implement policies that effectively promote diversity and inclusivity. This can also help address systemic barriers and create a supportive network for diverse clinical trial participation.
Ultimately, encouraging diversity in clinical trials is both ethically and strategically necessary to advance healthcare. The practical measures we’ve outlined here will create a more inclusive and representative landscape for clinical research.
These impactful steps can drive positive change, promoting equal access to healthcare interventions and better outcomes for all. Embracing diversity in clinical trials isn’t just the right thing to do; it’s essential for advancing medical knowledge and boosting global health and wellbeing.
Looking to improve diversity in your clinical trials? Sano can help – we can recruit diverse participants and boost long-term engagement. Get in touch below to find out more.