KEY FINDINGS

Practical Barriers

Qualitative results from Patient Advisory Council and physician focus groups highlighted that clinical trial participants often need to receive information in their primary language and, as with all patients, simple, nontechnical terms. The use of videos and infographics will also aid in building trust and understanding. 

As one patient told us:

In Queens, New York City, we have 250 languages. We do not expect every hospital to have all those translations, but we can at least pick 5 or 10 major languages within the areas where you want to reach out and bring diversity into trials. Yes, it’s going to be more expensive, but the value that is going to bring and the respect that it is showing to this community means that it’s explained in a way that someone can understand.
Ivis Febus-Sampayo, Patient Advisory Council Member Ivis Febus-Sampayo is a two-time breast cancer survivor as well as a patient advocate and Senior Director of Programs at SHARE Cancer Support. Ms. Febus-Sampayo is a board member of the National Board for Certified Counselors (NBCC) and is involved in both local and national committees. She has won local and national recognition as well as a number of awards through her work at SHARE.

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KEY TAKEAWAY

Offering clinical trial information in plain, easy to understand and appropriate languages is something industry can do swiftly to promote better research access.


Financial and other practical barriers, such as provision for childcare during visits, also pose significant challenges to trial participation for many patients, regardless of race or ethnicity. That said, such barriers were highlighted in the quantitative research by a greater proportion of Black, Latinx, Asian and Indigenous participants than white participants. For example, the number of required study visits was cited as the greatest barrier, followed by visit duration and payment for travel and for participation:

60% 50% 40% 30% 20% 10% 0% How much time it would take If I would be paid If my travel was paid How many times I would need to visit the hospital or research clinic Clinical Trial Consideration Factors Black, Latinx, Asian or Indigenous [N = 237] White [N = 1,945]

As one participant said:

Clinical trials, especially those within minorities and in certain areas, need to be accessible for those with limitations, both physically and financially. Many forget that even in this day and age not everyone has access to the internet or public forms of transportation.
Member of the Public, Interviewee

These barriers do not only affect the patient but also the caregiver. Caregivers are an often under-considered yet vitally important element to the success of any clinical trial and act as trusted advocates in the clinical trial process.

KEY TAKEAWAY

Reducing or eliminating practical and logistical challenges could have a significant impact on improving research across patient groups.


Reimbursement for time and travel is widely accepted by ethics committees/institutional review boards but is not always included as part of trial strategies. Similarly, decentralized clinical trials (DCTs) that center research around patient convenience and delivery in their home or community are increasing in popularity but are not yet the norm.

To successfully improve research and address the lack of adequate diverse representation in clinical research for many of those who are most affected by the illnesses being studied, both of the strategies mentioned above are recommended.



Some women, some African American women, don’t have time to come to chemo because they have children at home that have to be cared for. They don’t have time to come to medical appointments. They would love to be cured and love to be healed, but sometimes it is beyond their control. If you’re just saying, ‘Okay, they can’t come to the appointment, moving on to the next patient, that’s not going to help anyone. We’ve got to get behind the problem, to understand and solve the problem.
Yasmeem Watson, Patient Advisory Council Member

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Discussions on Diversity Report

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Executive Summary

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