Research results highlight a significant lack of trust in medicine in many communities, particularly related to the pharmaceutical industry. Patient concerns about receiving a placebo, negative medical events in history and a perceived lack of the physician’s understanding of some racial and ethnic groups have all been attributed to these feelings of mistrust and skepticism by participants:

I would want to do a lot of research before doing a clinical trial. I think people of color have to be very careful. I know how Black women were treated and studied without previous consent in the past. I would personally be hesitant in joining a clinical trial.
Member of the Public, Interviewee

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Such a view was also reflected in a physician's experiences:

Building trust is therefore critical to engagement in clinical research and will require enhanced patient engagement activities by site personnel:

In the global survey, doctors were regarded as the most trusted source of clinical-trial information

(58% of Black, Latinx, Asian and Indigenous respondents [N = 237] compared to 69% of white respondents [N = 1,945]):

70%80%90%60%50%40%30%20%10%0%AustraliaCanadaFranceItalyHungaryPolandSpainUKUSAWillingness to have COVID-19 vaccineBlack, Latinx, Asian and Indigenous [N = 237]White [N = 1,945]

 

Supplementary to this, participant interviewees and Patient Advisory Council members alike expressed that engagement with trusted community advocates to share research information and education is critical to success:

We have to meet patients where they actually are; they may not be in a medical center. You may have to go to a community center, a religious organization or local barbershops. If we train some community advocates, people who are in the community every day and who are trusted, you would be surprised at the level of complexity of conversations that happen.
Yasmeem Watson, Patient Advisory Council Member

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Family opinion was also viewed as important, with one physician explaining:

And, though outreach via advertising was not rated highly by any survey respondents, when it is utilized, preferences are as follows:

35%30%25%20%15%10%5%0%Social mediaNewspaper or magazineTelevisionHealth or medical websiteRadioTrusted Information Source (Media)Black, Latinx, Asian or Indigenous [N = 237]White [N = 1,945]

KEY TAKEAWAY

Results show a multipronged approach to promoting clinical research education through trusted site staff, advertising channels and advocates will benefit broader awareness, understanding and, in turn, improve research access.

 

Building Relationships Between Patients and Site Staff

During both physician focus groups and Patient Advisory Council discussions, patients being treated by site staff of the same race, ethnicity or cultural background was viewed as being a very important aspect of increasing diversity in clinical research and one that can prove difficult to achieve.

Interestingly, interviews with members of the public and quantitative research results indicated that this was a far less significant consideration, with a combined 20% of Black, Latinx, Asian and Indigenous participants globally compared to 11% of white participants citing it as important.

I don’t believe ethnic background has any influence in qualifications or anything to do with my confidence in the safety of the study.
Member of the Public, Interviewee

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The reason for such differences in opinion was not explored in the research. However, it could perhaps be a result of those with greater experience with medical interactions citing this as a key consideration. Partnering with sites with greater staff diversity could therefore help address the current gap in research participation among some racial and ethnic groups, and the issue certainly warrants further exploration.

When it is not possible for patients to be treated by site staff from a similar racial, ethnic and/or cultural background, it is critical for staff to understand and accommodate differences in cultural norms. This helps patients, caregivers and families feel comfortable, build trust and ensure that they are making treatment decisions that are right for them.

There are cultural differences that are not accepted or even considered within the medical community. Sometimes, entire families come to an appointment because everyone wants to be involved in medical decisions. It’s just different things that you have to pay attention to.
Yasmeem Watson, Patient Advisory Council Member

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KEY TAKEAWAY

Respondents to this research highlighted a preference by many patients for being treated by someone who looks like them. Where this is not possible, some site staff may benefit from cultural competency training to optimize the patient experience.



Discussions on Diversity Report

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Executive Summary

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