Tia Tackles: Why BIPOC Need Patient Advocates

Last week we hosted our very first Tia Tackles event — Dr. Terri-Ann Bennett shared her wisdom and expertise in conversation with Dr. Stephanie McClellan, Chief Medical Officer of Tia. They spoke about the need for patient advocacy for BIPOC, what patient advocates do, and how to weave them through the clinical experience from institutional change to providers to the layperson. Here is some of what we learned.

The basics

An advocate is a person who publicly supports or recommends a particular cause or policy. A distinguishing factor of advocacy is that it is conducted publicly. Dr. Terri-Ann Bennett, a self-proclaimed disruptor and patient advocate, explains “much like love, advocacy is an action word.” To be an advocate, or to advocate, there must be a component of action and this action must be conducted publicly.

A patient advocate is a person who supports patients in better communication to achieve their healthcare needs, get information, and make decisions about their healthcare.

Why do BIPOC experience disparity in the current system?

The American healthcare system has a long legacy of racism and discrimination, fuel for the disparity that is pervasive in this system. Navigating the healthcare system is daunting for most, but especially for BIPOC. Due to an array of access barriers, BIPOC not only receive less care than white people but also receive worse care. BIPOC are disproportionately misdiagnosed, under-diagnosed, and mistreated, quality of care directly correlates to worse health outcomes.

Emotional expressions and experience of pain by Black individuals are more likely to be misperceived. Pain is under-diagnosed and under-treated as a result of racial bias. Stereotyping is ever-present in clinical situations, leading certain populations to emphasize specific class and cultural resources such as cultural health capital (cultural skills, attitudes, behaviors, and interaction styles) to leverage and mitigate discrimination.

Epigenetics, the study of inherited genetic trait changes, is a quickly evolving field showing that trauma and its effects may be passed through generations, recognizable through gene expression and cellular activity that is influenced by external factors such as environment. Inherited trauma may be likened to the permanence of scar, the remnants of the initial wound become a scar inscribed into a person that then passes on through their lineage. Generational trauma can impact livelihood via both the mind and body.

There are social determinants of health that directly impact BIPOC — economic and social conditions, such as living and working conditions (think: the distribution of income, wealth, influence, and power) that influence individual and group differences in health status (think: risk and vulnerability of disease or injury) and access to care.

How can we create a built-in system for patient advocacy?

Trust facilitates care-seeking behavior and promotes patient honesty and adherence. Distrust inhibits care-seeking and may lead to non-adherence. One study in Chicago looked at how trustworthy Black people found their physicians. The study found that participants indicated that trust is determined by the interpersonal and technical competence of physicians. Contributing factors to distrust in physicians included a lack of interpersonal and technical competence, perceived quest for profit, and expectations of racism and experimentation during routine health care. Another study looking at race in patient-physician relationships found that the quality of interpersonal care is vital in facilitating a patient’s involvement in their care, increased patient involvement improves patient satisfaction and outcomes.

One way to effectively create institutional change is to promote diversity within the healthcare system. Data suggests that African American patients rate their visits with physicians as less participatory than whites. However, patients seeing physicians of their own race rate their physicians’ decision-making styles as more participatory. Improving cross-cultural communication between physicians and patients and providing patients with access to a diverse group of physicians may lead to more patient involvement in care, higher levels of patient satisfaction, and ultimately, better health outcomes. A study conducted by Stanford looked at Black men in Oakland, found that men seen by Black physicians were more likely to engage with them, and even consent to preventive services like cardiovascular screenings and immunizations. Black doctors were 71% more likely to get their patients to receive a cholesterol screening, whereas non-Black doctors were 45% as likely. The study estimates this approach could reduce the Black-white mortality gap due to heart disease by 19%.

Dr. Terri-Ann Bennett believes that providers should be trained early on in their schooling to understand not only bias but also the actual biological differences that result from inherited trauma. Beyond this training, she recommends that providers continually check their bias while working with patients and actively seek to understand why their patients have fears or misunderstandings. Understanding why gives way to an empathetic response, leading with empathy engenders advocacy. Dr. Bennett suggests implicit bias training but also asks that providers take it a step further by enhancing their cultural competency and actively work to have an anti-racist practice.

In conclusion

Research shows that patient advocacy is effective. One study looking at a sample of 30–74-year-old self-identified African-American and/or Black women who had received abnormal mammogram results found advocacy to be a positive factor in their medical experiences. The participants felt that engaging in medical advocacy helped address ongoing experiences of mistrust and racism in the medical setting. Participants also expressed that they felt accountable for their own bodies because they were involved in decisions about their care because they were informed about their decisions.

Institutions can support patient advocacy by…

• Promoting body literacy by actively teaching and making information readily accessible which empowers patients to advocate for themselves.
• Personalizing medicine, rather than generalizing.
• Revolutionizing healthcare delivery by incorporating patient advocates throughout the patient journey and actively supporting their presence (eg. doulas, friends and family members joining appointments).

Providers can advocate for their patients by…

• Empowering them through teaching and shared-decision making.
• Reminding patients of their rights.
• Using communication styles that support understanding.
• Ensuring care continues after appointments (eg. follow-ups, lifestyle changes, medication, etc.).

Patients can advocate for themselves by…

• Bringing someone with them (eg. friend or family member) for support. Note: hospital systems and third party agencies are often able to provide advocates to patients.
• Not ending an appointment until they feel they understand their provider fully.
• Researching before and after visits.
• Ask all the questions! Ask why and why again! Ask about side-effects, advantages, and disadvantages of recommendations made by the provider. Pro-tip from Dr. Bennett: come to your appointment with your questions written down.
• Familiarizing themselves with the patient bill of rights*.
• Asking for an interpreter if needed.

*A patient’s bill of rights is a list of guarantees on patient information, fair treatment, and autonomy over medical decisions for those receiving care. It is usually found in the paperwork you sign upon arrival!

Sources:

Cooper-Patrick, L., Gallo, J. J., Gonzales, J. J., Vu, H. T., Powe, N. R., Nelson, C., & Ford, D. E. (1999). Race, gender, and partnership in the patient-physician relationship. JAMA, 282(6), 583–589. https://doi.org/10.1001/jama.282.6.583

Jacobs, E. A., Rolle, I., Ferrans, C. E., Whitaker, E. E., & Warnecke, R. B. (2006). Understanding African Americans’ views of the trustworthiness of physicians. Journal of general internal medicine, 21(6), 642–647. https://doi.org/10.1111/j.1525-1497.2006.00485.

Marcella Alsan & Owen Garrick & Grant Graziani, 2019. “Does Diversity Matter for Health? Experimental Evidence from Oakland,” American Economic Review, vol 109(12), pages 4071–4111.

Mende-Siedlecki, P., Qu-Lee, J., Backer, R., & Van Bavel, J. J. (2019). Perceptual contributions to racial bias in pain recognition. Journal of experimental psychology. General, 148(5), 863–889. https://doi.org/10.1037/xge0000600

Molina, Y., Hempstead, B.H., Thompson-Dodd, J. et al. Medical Advocacy and Supportive Environments for African-Americans Following Abnormal Mammograms. J Canc Educ 30, 447–452 (2015). https://doi.org/10.1007/s13187-014-0732-9

Tina K. Sacks (2018) Performing Black womanhood: a qualitative study of stereotypes and the healthcare encounter, Critical Public Health, 28:1, 59–69, DOI: 10.1080/09581596.2017.1307323