Trust is the golden thread that binds patients and providers together. However, for Black communities, this thread has often been frayed—strained by historical injustices, systemic biases, and disparities in access to quality care. In the cancer community, studies indicate that Black patients report higher medical mistrust compared to their White counterparts.1 As a result, BlackDoctor.org delved deeper into analyzing medical trust, conducting a study that not only sheds light on the challenges but also illuminates a path toward rebuilding trust.

At BlackDoctor.org, we want everyone to know the profound impact that community input has on shaping health care initiatives. Recognizing the need to amplify the voices of Black communities and advocate for change, we embarked on a journey to conduct a comprehensive study focusing on trust in health care within these communities.

“Trust remains the number 1 gap we must overcome to achieve health equity, and we are committed to walking hand-in-hand with pharma to get it right and move quickly,” said Reggie Ware, CEO at BlackDoctor.org. “Trust is
the foundation for health equity strategies, and reaching Blacks in a trustworthy manner, in places they trust, by people they trust must be the lens.”

For this study, the polling process was meticulously designed to ensure that the voices of Black adults were heard and represented authentically. Conducted in early 2024, our survey data of 500 Black individuals, gained deep insights into the challenges, concerns, and aspirations surrounding health care trust.

The Black Community Values Honesty, Transparency, and Holistic Care

Our data reveals a resounding chorus: honesty, transparency, and holistic care are the bedrock upon which trust in cancer care stands. More than 80% of respondents emphasized these qualities as non-negotiables. When it comes to cancer, the stakes are high, and the need for clear and honest communication becomes even more paramount. It is not merely about receiving a cancer diagnosis or a prescription; it is about feeling seen, heard, and respected as individuals with unique stories and needs.

For too long, Black people with cancer have been reduced to statistics—their voices silenced or dismissed. Our study echoes what many have long known: trust requires health care providers to acknowledge the full humanity of people with cancer—listening attentively and believing their experiences, symptoms, fears, and concerns. A majority of respondents (77%) believe that trust requires health care providers to see and treat patients as whole people and not just their symptoms and 68% want providers to believe them when they describe how they are feeling.

How to Build Black Trust in Cancer Care

Trust is not built on words alone; it is forged through actions, sustained by a demonstrated commitment to the community. More than half of our respondents highlighted the importance of organizations, particularly those specializing in cancer care, investing in long-term relationships with the communities they serve. Trust in cancer care is not a one-time transaction; it is a journey of mutual respect and partnership. In a signal to organizations that one-time efforts are not effective in building trust, 58% of respondents say their trust is dependent on organizations demonstrating a long-term commitment to their community.

Crucially, our study illuminates a clear pathway forward for improving trust in cancer care. When asked what steps cancer care organizations could take to earn their trust, 40% pointed to the importance of representation. Thus, hiring more Black health care professionals specializing in oncology should not be about satisfying diversity quotas, but about fostering a sense of belonging and cultural competence within cancer care settings. It is about ensuring that the faces and voices of the Black community are reflected in decision-making processes and treatment approaches in comprehensive cancer care delivery.

Cancer in the Black Community: A Distinct Challenge

Cancer, a formidable adversary in the realm of public health, presents unique challenges within the Black community. Blacks often face a disproportionate burden of certain cancers, with higher incidence rates and poorer outcomes compared to other racial and ethnic groups. Understanding the intricacies of cancer disparities is crucial in developing effective strategies to address these challenges.

Our study delves into the specific dynamics of trust in the context of cancer care for Black individuals. It became evident that establishing and nurturing trust between Black patients and health care providers is not only fundamental to overall health care but is particularly crucial in the context of cancer diagnosis, treatment, and survivorship.

Empowering Through Knowledge: A Crucial Component in Cancer Care

Moreover, our findings underscore a pressing need for greater access to cancer-related health information, particularly around new treatments and clinical trials. Knowledge is power, and when it comes to cancer, empowering individuals with information becomes a matter of life and death. Half of our respondents express a desire for more insight on innovative treatments, while over a third sought guidance on navigating the complexities of clinical trials.

BlackDoctor.org Chief Marketing Officer Derrick Lane underscores the organization’s commitment to normalizing Black participation in clinical trials, leading with trust and educating the organization’s 20 million audience reach on Facebook and 6 million monthly visitors to its website. “We are entering new territory to meet diversity in clinical trials standards,” he said. “Awareness and collaboration are paramount to improve health and set up our legacy in good health.”

In 2024, BlackDoctor.org intends to work closely with pharmaceutical companies, community health workers, and local influencers to bring awareness to its Clinical Trial Resource Center and engage in important conversations around health equity for measurable impact and improved health outcomes.

Motivations and Barriers in Black Cancer Care

The motivations and barriers to cancer-related health decisions within the Black community also emerge as significant themes in our study. A staggering 85% of respondents cited “feeling better” and “staying healthy for family” as their primary motivations for making healthy choices related to their cancer care. This finding highlights the deeply rooted connection between personal well-being and familial relationships, especially when facing the formidable challenge of cancer.

Conversely, financial considerations emerge as a notable barrier in the realm of cancer care, with 50% of respondents expressing that cost-savings on cancer prescriptions and access to information on new, innovative cancer treatments would significantly impact their ability to navigate their cancer journey effectively.

Communication and Accessibility in Cancer Care

Our study also dives into communication patterns in cancer care, revealing that nearly 90% of respondents actively engage with their cancer care providers. In comparison, 75% discuss their health journey with family or friends. These conversations play a vital role in shaping cancer-related health decisions and outcomes, underscoring the importance of open communication channels within the cancer care ecosystem.

Furthermore, respondents express practical steps to facilitate better cancer health outcomes, with nearly 75% identifying the financial aspect as a significant concern. Additionally, more than half (55%) advocate for the creation of a cancer-specific checklist to be used at doctor appointments, while 54% emphasize the need to simplify health information to make it more accessible and understandable.

Underrepresentation in Clinical Trials

As Blacks have a higher mortality rate, it is partly a result of underrepresentation of Black patients in clinical trials. According to the most recent drug trial data from the US Food and Drug Administration, only 11% of the near 5,000 participants in clinical trials of 18 new cancer drugs approved in 2020 were Black or Hispanic.2

BlackDoctor.org is committed to amplifying the voices of Black communities and advocating for change in cancer care. Our study serves as a call to action for healthcare providers, policy-makers, and community leaders to prioritize trust-building efforts, especially in the realm of cancer care, and address the underlying factors driving health disparities. By working together, we can create a cancer care system that is truly equitable, inclusive, and trusted by all.

Jade Curtis is Executive Editor at BlackDoctor.org.

References

1. Sutton AL, He J, Edmonds MC, Sheppard VB. Medical Mistrust in Black Breast Cancer Patients: Acknowledging the Roles of the Trustor and the Trustee. J Cancer Educ. 2019;34(3):600-607. doi:10.1007/s13187-018-1347-3
2. US Food and Drug Administration. 2020 Drug Trials Snapshots Summary Report. Fda.gov. Published February 2021. Accessed July 16, 2024. https://www.fda.gov/media/145718/download