Movement is Life Caucus

Travelle Ellis

COVID-19 has laid bare the inequities that plague our healthcare system. Although we know that the virus disproportionately affects African Americans, Latinos and the economically disadvantaged, the virus itself is not the root cause of these inequities.

Why is it that people of color and poor people are much more likely to be hospitalized or die from the virus than white and/or wealthy people? The answer is systemic and structural racism within our healthcare system.

The recent Black Lives Matter (BLM) demonstrations have thrust systemic racism back into the national dialogue. While demonstrations are largely focused on systemic racism within our criminal justice system, they have sparked a much needed broader conversation about systemic racism in other parts of our society such as healthcare. Dr. Martin Luther King Jr. said “Of all the forms of inequality, injustice in health care is the most shocking and inhumane.” With that quote, Dr. King is describing systemic racism. As long as systemic racism exists within our healthcare system, patients will needlessly suffer.

Systemic racism, also referred to as institutional or structural racism, refers to the ways in which society reinforces discriminatory beliefs and distribution of resources through systems such as housing, education, healthcare and criminal justice. Three common examples of structural racism within our healthcare system are unconscious bias, health illiteracy, and cultural barriers.

Unconscious bias is perhaps the most egregious example. Though often unintentional, unconscious bias reinforces inaccurate assumptions about different groups of people. A study from 2013 demonstrates unconscious bias relative to gender. The study had a male and female patient describe identical knee pain symptoms to the same set of physicians. The study found that the male patient received significantly different information and advice than the female patient. The physicians provided less medical informationand less encouragement to undergo knee replacement surgery to the female patient than to the male patient. If the patients described the exact same symptoms shouldn’t they have received the same medical advice?

Health literacy refers to the ability of patients to understand medical information and make informed decisions about their health. Studies have shown prevalent racial disparities due to lack of health literacy.

Mary I. O’Connor, M.D.,Chair, Movement is Life Caucus

Cultural barriers, including language barriers, are a contributing factor for racial disparities in health. For example, a 2013 study found that language and cultural differences between healthcare providers and Asian immigrants can lead to decreased quality of care and dissatisfaction with the patient’s experience which may discourage necessary follow-up visits.

To help combat structural racism, we must empower patients to play a more active role in their healthcare decisions with their providers. This concept of shared decision making means patients and providers make data-informed decisions about the various treatment options and their associated risks and opportunities based on patients’ preferences and values.

As part of a national coalition dedicated to reducing health disparities, we developed a shared decision making tool for providers to engage patients with chronic knee pain. The tool, which is available online and free to use, was developed using a rigorous, data-informed process. Peer-reviewed analysis of the shared decision making tool showed that it helped patients make more informed treatment decisions for their knee pain.

The tool directs the patient to input information about their level of pain and the effect it is having on their daily life. It also asks for the patient’s gender, race, ethnicity, weight (BMI) and if they have certain chronic medical conditions. It then calculates how various treatment options will impact the patient’s pain, mobility and income based on other patients like them. This personalized approach is, we believe, unique to the tool and powerful for engaging patients. Importantly, the tool also projects the likely progression of symptoms and if patients do nothing.

Empowering patients lies at the foundation of transcending structural racism in our healthcare system

Think about how this tool could have helped the male and female patients in the unconscious bias study referenced above. This tool would have provided the same treatment information to the two patients instead of the provider’s biased treatment advice. The patients would be more empowered to advocate for themselves.

This tool is also designed to account for cultural barriers and health literacy. It relies on graphics and numbers that are easy for any layperson to understand. It also puts the information in the relatable contexts of mobility functions (e.g., walking) and lost income from missing work or losing opportunities for professional advancement due to the pain.

We know the tool is having positive healthcare results. Preliminary research data from follow up studies shows that use of this shared decision making tool increases levels of self-reported physical activity.

Empowering patients lies at the foundation of transcending structural racism in our healthcare system. Shared decision making pushes aside unconscious bias and cultural barriers that patients face in the exam room. Eliminating structural racism from our healthcare system will not occur overnight. However, we do not need to wait for systemic reform to begin helping patients. We must embrace the concept of shared decision making and fund research and development of new tools for more conditions across clinical settings.