Importance of Engagement and Outreach in Underrepresented Communities for Clinical Trials
Clinical trial methods change with each new study. However, one area remains the same.
That area is the lack of diversity in study populations.
Individuals participating in many of the current trials are not a realistic representation of our society. This lack of representation can cause several problems.
Today, we will examine some of these problems while discussing the importance of engagement and outreach in clinical trials.
The Impact of Underrepresentation on Medical Research
Recent reports show that out of 32,000 participants in a clinical trial, only:
- 8% were Black
- 11% were Asian
- 6% were Hispanic
This statistic is just from one trial. However, it reflects the larger problem we face in medical research.
Let’s look closer at the impacts this underrepresentation can have.
Limited Results Generalizability
Limited generalizability of study results is one of the main consequences of underrepresentation.
When you exclude specific groups from a clinical trial, this is what happens:
- Applying the study findings to larger populations becomes difficult
- Scientists will make inaccurate assumptions about the safety and efficiency of a drug
Delayed Treatment Development
Excluding some demographics from a trial can also delay the development of new treatments. Scientists will have limited data for evaluating the effects of a medication.
Without enough data, it will take longer for new treatments to get approved and enter the market.
Health Disparities
There are already significant health disparities in our society, which are only exacerbated by underrepresentation in clinical trials.
For instance, with a cancer drug shortage occurring, many cancer patients from diverse groups not included in the trials may not receive timely new treatments. As a result, they may lose their battle against cancer.
Unrealistic Representation of the Real-world Population
Current participants in clinical trials do not accurately represent the real-world population we encounter in our society.
Clinical trials must include people of all:
- Ages
- Races
- Genders
- Ethnicities
- Socioeconomic backgrounds
No Variation in Response to Treatment
Without adequate representation in clinical studies, we won’t know how new medications will affect different groups.
This lack of variation in treatment response can lead to:
- A general approach to treatment without customization
- Missed opportunities for developing personalized medicine
- Development of drugs that are ineffective or unsafe for some demographics
An Unethical Practice
Equal representation is not just a scientific imperative. It’s also an ethical necessity.
Ensuring diversity aligns with our principles of:
- Justice
- Fairness
- Respect for rights
Without it, we will see unequal health outcomes among diverse and underrepresented groups.
Barriers to Diversity in Clinical Trials
Underrepresented communities often face barriers to participation. Let’s look at some of them.
Lack of Awareness
One of the factors keeping many potential candidates from participating in trials is that they don’t even know these trials exist.
Many individuals, especially those from deprived communities, don’t have access to information about clinical trials.
This lack of access translates to researchers conducting studies with less diverse groups of people.
Mistrust of the Medical Community
The medical community doesn’t have a good record of treating diverse populations well in clinical studies.
The instances of exploitation throughout history have harbored a deep-seated mistrust, leading many eligible candidates to avoid trials, even if they can benefit from them.
Socioeconomic Factors
Another barrier to more diversity in clinical trials is socioeconomic inequity.
People from less fortunate socioeconomic backgrounds may have:
- Financial constraints
- Difficulty taking time off work
- Limited access to transportation
These factors prevent them from rearranging their schedules to participate in clinical research.
Language and Cultural Barriers
Lastly, underrepresentation in clinical trials may stem from linguistic and cultural barriers. Many study materials are not available in multiple languages. They may also not be culturally sensitive.
These are all factors that make it difficult for eligible patients to understand the studies and take part in them.
Strategies for Engaging and Reaching Out to Underrepresented Communities
There are several strategies for effectively increasing diversity and inclusion in peer-reviewed studies and clinical trials. Here are some of them.
Community Partnerships
The first step you can take to increase engagement in your studies is to establish partnerships with:
- Local community leaders
- Community organizations
- Local faith-based groups
By collaborating with trusted community partners, you can:
- Reach a broader audience
- Build trust with community members
- Leverage the existing relationships and network
- Provide more opportunities for education and outreach
- Bridge the gap between researchers and the community
Culturally Sensitive Communication
Culturally sensitive communication is crucial when engaging with underrepresented communities.
Tailor your recruitment efforts to the cultural needs of the target group to encourage more study involvement.
These efforts can include using culturally appropriate:
- Videos
- Images
- Language
- Messaging
Keeping cultural norms in mind when reaching out to potential participants allows you to make the information about the study more accessible and relatable.
Education and Awareness
You must provide comprehensive information about the process to raise awareness about the trials and address misconceptions some people may have.
You can spread this information through:
- Workshops
- Campaigns
- Community events
These educational campaigns will give all members of a particular community the chance to participate in trials.
Facilitating Access
Finally, you can increase engagement by making trials more accessible.
You can facilitate accessibility by:
- Offering telehealth options
- Offering flexible appointment times
- Providing transportation assistance
- Providing childcare services for families
- Locating study sites in easily accessible locations
Addressing these logistical barriers can help you increase the likelihood of recruiting a more diverse group for your clinical trials.
More Effective Treatments With More Engagement
Community engagement from underrepresented demographics is a practical necessity for clinical trials.
Encouraging diversity in these trials will lead to the development of more effective treatments that can benefit everyone in society. This is the only way to advance medical knowledge accurately.
