BY
The primary role of a health advocate is to help patients find the best care possible and to help people have more choice, control (and therefore) power over their medical life. As this field of health advocacy has emerged, we have identified three areas advocates apply their role:
- Understanding the patient
- Supporting the patient’s goal/s
- Asserting the patient’s wishes
However, we know that health and healthcare are overwhelmingly influenced by social determinants of health.
Social determinants of health (SDoH) are defined as “the conditions in which people are born, grow, work, live, age, and the wider set of forces and systems shaping the conditions of daily life and are responsible for most health inequalities.”1 In understanding the patient, it is critically important to understand social determinants of health— many of which have nothing to do with health.
In a recent Annals of Internal Medicine2 article, the authors identified studies that overwhelmingly noted nonmedical factors that have a tremendous impact on physical and mental health, including attributed deaths of disparities:
- 245,000 deaths attributed to low education
- 176,000 deaths attributed to racial segregation
- 133,000 deaths attributed to individual-level poverty
- 119,000 deaths attributed to income inequality
In addition to SDoH having a dramatic impact on a person’s life and health, the COVID-19 pandemic has laid bare the reality that all patients do not receive the same or even similar care, especially if you are part of a racial or ethnic minority.
In 2002, the Institute of Medicine published a report called Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare3 which highlighted how people are not treated similarly and that people belonging to racial and ethnic minorities receive substantially lower quality of care. Disappointingly, the healthcare outcomes related to this have not significantly improved in the 19 years since this report was published.4
Since health advocates are the role-appropriate driver of identifying the background, experience and treatment barriers for patients, advocates should be learning and working on identifying and resolving barriers related to disparities and supporting actions to move us toward health equity in the healthcare system.
WHAT IS HEALTH EQUITY AND WHY IS IT IMPORTANT?
The Institute for Healthcare Improvement defines health equity as realized when each individual has a fair opportunity to achieve their full health potential.5 Inequities in the healthcare system are the unwanted variation in treatment and are often linked to historical racism, ableism, ageism and other forms of oppression. While there is agreement that these issues exist, we have only begun understanding how to start battling these barriers which prevent patients from receiving the best care possible.
It is difficult to change what you don’t see, measure or think about. For advocates to engage in assisting in making changes to the quality of care and outcomes of patients, we should be familiar with well researched health issues affected by inequities, such as:
- COVID-19 Disproportionate Impact6 Throughout the pandemic, we have seen that American Indian and Alaska Native, Black, and Hispanic people have experienced disproportionate rates of illness, hospitalization and death due to COVID-19. Beyond the direct health impacts of the virus, the pandemic has taken a disproportionate toll on the financial security and mental health and well-being of people of color, low-income people, LGBTQ+ people, and other underserved groups. Despite being disproportionately affected by the pandemic, as of April 2021, Black and Hispanic people were less likely than white people to have received a COVID-19 vaccine.
- Maternal Health Black women are three times more likely to die from pregnancy-related causes than white women, and many of these are preventable.7 Advocates can work with pregnant women to make sure they know to seek immediate care if experiencing urgent maternal warning signs, including severe headache, extreme swelling of hands or face, trouble breathing, heavy vaginal bleeding or discharge, overwhelming tiredness and more. These symptoms could indicate a potentially life-threatening complication.
- Pain Management Multiple studies have shown that racial disparities in healthcare are particularly evident when it comes to treating pain. In a 2016 study, it was reported that Black Americans are less likely to be treated for pain, and when they are treated they are given lower doses of pain medication.8 There is well-documented racial bias in pain management. Advocates should participate in learning about what racial and implicit bias is, to assist in making sure that all patients have equitable access to treatment.
- Racial Discrimination in Healthcare System Recent research of patient-reported experiences suggests that racial discrimination may be more widespread than previously thought.9 This study estimates one in five adults in the U.S. have experienced discrimination at least once while receiving healthcare. Racial discrimination was the most commonly reported type of discrimination, followed by discrimination based on educational or income level, weight, sex and age.
By understanding common areas of discrimination or bias, advocates can be aware and think through strategies that may help patients overcome or successfully navigate these barriers to better health outcomes.
HEALTH ADVOCATES CAN ASSIST PATIENTS AND THE HEALTHCARE PROVIDER SYSTEM
In order to move toward a more equitable experience, health advocates are uniquely positioned to assist with this vision. Here are some specific action steps:
- Individualizing the Patient — Making sure the medical provider understands the patient as an individual to combat stereotyping. The patient should include personal history and context that brought them to the provider.
- Perspective Changing—Help the provider think about choices from the patient’s perspective—ask the provider to explain choices as if he/she “was in this person’s shoes,” or if you were a relative of the patient.
- Preparing in Advance—Meet the patient in advance of the provider visit to identify areas that might be of concern, discomfort or trauma. Identify whether the provider/practice uses a trauma-informed care treatment model that ensures healthcare responses are culturally sensitive, especially when trauma stems from historical racial trauma.
- Confidence Building—By working alongside the patient, advocates can identify and reflect back what is happening during a provider visit or interaction. This may be helpful in having a second set of eyes and ears in the situation. An advocate can also support a patient’s wish for a provider change if the patient feels that the provider is not a good fit.
ADDITIONAL LEARNING RESOURCES FOR ADVOCATES
Health equity, social determinants of health and racial or implicit bias in healthcare are complex subjects that you cannot learn about overnight. Whether this is a new area for advocates to explore or research that informs the work, we all need to commit to participating in recognizing and combating racial and ethnic bias in healthcare. The most important thing is that ALL advocates at least start to take action. Here are some resources that might be helpful in exploring these topics more:
- Trauma-Informed Care, 2020 HealthAdvocateX Virtual Conference Session, by Michele Adrasik, PhD, EdM: https://www.eventbrite.com/e/on-demand-ce-trauma-informed-care-tickets-130056028081
- To understand your own racial bias, Harvard has several on-line tests you can take through Project Implicit: https://implicit.harvard.edu/implicit/takeatest.html
- Know about the Centers For Disease Control and Prevention Hear Her Campaign to address inequities in maternal health: https://www.cdc.gov/hearher/index.html
- Free, online professional training ThinkCulturalHealth, offered by the U.S. Department of Health and Human Services, Office of Minority Health to help healthcare professionals provide culturally and linguistically appropriate services (CLAS): https://thinkculturalhealth.hhs.gov/education
It has been said previously that health advocacy is a social justice movement. Health disparities is a long-standing societal issue which is vital to address from a social justice standpoint and to improve our nation’s overall health and economic prosperity. I hope all advocates make it a priority to contribute to the global goal of health equity for all. If everyone participates, we have a much better opportunity to make this goal a reality!
A pioneer in the Health Advocacy Movement, has spent her 30+ year career helping people find their voice to improve their care. She has founded award-winning healthcare engagement companies (including HPG LLC) and co-founded HealthAdvocateX, a non-profit whose mission is to help people transform from patient to active participant in their own care. She is the current Board Chair of HealthAdvocateX. She is also the bestselling author of The Secret Language of Healthcare: How to Ask for the Care You Deserve. Visit her on LinkedIn: https://www.linkedin.com/in/robin-shapiro-5645595/
