The importance of clinical research is widely recognized and while many decide to participate in clinical trials, there is a lack of representation of individuals from underserved communities. In 2019 alone, 46,391 individuals participated in clinical trials that resulted in the approval of 48 new drugs, yet a limited number of study volunteers identified as black/African American, Asian, and/or Hispanic.
Current efforts to address this lack of representation include a guidance document released by the FDA encouraging pharmaceutical companies to broaden their eligibility criteria and to recruit individuals from diverse communities and establishing study sites in areas that lack clinical trial opportunities. While these efforts are critical in increasing diversity and inclusion in clinical trials, it is equally important to understand how clinical research is viewed from a broad audience.
Every two years, the Center for Information and Study on Clinical Research Participation (CISCRP) conducts a global online study to gather insights on the public and patients’ perceptions and experience with clinical research. Responses from over 12,450 individuals were collected, with representation from many communities, including black (6%), Asian (10%), and Hispanic (13%). These are some highlights that can be applied to promote diversity and inclusion in clinical research studies.
Acknowledging the Importance of Clinical Research
Individuals across many races and ethnicities acknowledge the value of clinical research studies. Many consider clinical trials to be “somewhat/very important” to the discovery and development of new medicines. Additionally, the greatest benefits of participation in clinical research include helping to advance science and the treatment of patient’s disease/condition (26 percent) and the possibility of improving or saving the lives of others with the same condition (21 percent). This highlights how individuals perceive and understand the positive impact participation can have – by potentially helping themselves and others through research. Yet few individuals had recently seen or heard about a clinical trial opportunity, notably 53 percent of Asian and 52 percent of Hispanic individuals did not recall recently learning about an available trial.
Where Do People Look For Clinical Trials?
Many would begin looking for a clinical trial opportunity by asking their healthcare provider or by using an online resource. For example, over half of black individuals (52 percent) would use an online clinical trial registry, such as clinicaltrials.gov, and 42 percent of Asian individuals would use an internet search engine like Google. Recommendations from family members are also important to underserved populations in their search for clinical trials.
The relationship between healthcare providers and their patients can be leveraged to increase awareness of and participation in clinical trials. It is important to many that their healthcare provider be aware of ongoing clinical trials in their local communities. Additionally, 66 percent of black individuals report being more willing to participate if their own doctor is conducting the trial. However, less than 25 percent of Hispanic and black individuals learn about a clinical trial opportunity through their healthcare providers, highlighting a significant gap between where individuals prefer to learn about clinical research and where they look for opportunities.
Pharmaceutical companies can take an important first step by informing healthcare providers about new clinical trial opportunities in underserved communities. These providers can then share these opportunities with their patients in a trusted and comfortable environment. Recognizing where patients currently begin their search for trial opportunities also presents an opportunity for pharmaceutical companies to target recruitment efforts in these areas to better engage this audience.
To learn more about how CISCRP is educating and informing the public and patient communities about clinical research, visit: www.ciscrp.org
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