ENCOURAGING PARTICIPATION OF MINORITIES IN RESEARCH STUDIES

Recruitment of participants for research studies can be challenging. Recruitment of minorities is especially challenging, leading to underrepresentation of minorities in clinical trials, even for conditions that disproportionately affect minorities.¹ This is worrisome, since lack of ethnic and racial diversity in study participants hinders the ability to generalize findings and thus the results may not truly identify the best treatments available. Furthermore, studies without adequate minority representation may miss relevant findings that are unique to that group due to cultural, environmental, or physiologic factors. In light of this, agencies such as the National Institutes of Health (NIH) and United States Food and Drug Administration (FDA) have made statements emphasizing the scientific and ethical obligation to include minority participants in research studies.^2,3 Consequently, investigators need to ensure they are including a representative sample of participants in their studies. Several strategies have been suggested that may help improve minority recruitment. Some of the strategies investigators should consider include:

1. Work to Establish Trust With Eligible Participants

There are a number of ways to establish trust. Interacting with individuals of a similar ethnic or racial background can help initiate a trusting relationship. Since there is a scarcity of minority investigators, a commonly used strategy is to hire research staff from diverse racial and ethnic backgrounds. However, it is not enough to just have a diverse research group. All those involved with recruitment and ongoing interactions with participants need to be sensitive to personal beliefs that may impact research participation. In addition to providing patient-centered care, we should also develop participant-centered recruitment strategies that help us identify barriers for participation and address these on an individual basis.

2. Perform a Community Assessment

An accurate assessment of the community where recruitment will occur may be vital to success. This assessment should not only identify places where diverse populations live, work, and spend their free time, but also should include discussion of media usage habits, sources of health care, and community leaders. This information can help to target recruitment efforts to maximize success and may lead to the use of novel recruitment strategies, such as the use of social media or development of a fotonovela to explain research participation.

3. Form Relationships With Health Care Providers That May Help You Recruit Diverse Participants

Encouragement from a patient’s health care clinician can be a very effective means of recruiting racially and ethnically diverse participants, as many patients respond positively to their physician’s advice. In fact, one study found that 75% of patients offered the opportunity to be in a clinical trial by their physician agreed to participate.⁴ Thus, identifying health care clinicians who serve a diverse group of eligible patients and encouraging them to refer patients for trials may be very valuable. However, being aware of barriers to referring patients, such as lack of time, lack of awareness regarding available trials, concerns regarding the amount of additional work required to make a referral, distrust of institutions conducting research, and preconceived notions regarding patients’ willingness to participate is important. If these and other barriers are not addressed, referrals will not occur. Consequently, when referring possible participants, taking the time to review recruitment protocols to ensure clinicians are minimally affected and addressing clinician concerns are very important. Similarly, providing feedback to the clinician after referrals are made is also important, as clinicians do not want to feel they will lose their patient if they join a trial.

4. Build Foundations for Community Involvement and Support

In addition to establishing trust with individuals, be it the participant or a health care clinician who is helping with recruitment, the broader issue of trust within the community also should be considered. If the community distrusts research, investigators may not even get the opportunity to build trust on an individual basis. Therefore, linking with community leaders is vital, as they can help set a positive tone regarding research activities. This includes not only making initial contacts to explain the research studies, but also maintaining ongoing relationships. Establishing community advisory panels can be one method of ensuring community involvement. Additionally, a commonly expressed frustration from community leaders is that once the study is finished, they are never informed what was learned. Thus, investigators should not believe their study is finished until they have disseminated their results back to the community and participants involved.

Although recruitment of minorities into studies may take active planning and implementation of extra measures, the wealth of information that will be available if minority recruitment improves are worth it. Ongoing studies are needed to continue to develop new strategies to improve recruitment overall, and specifically for minority participants.