Breanna Reeves and Aryana Noroozi
While a large percent of Black people in California are insured and have a regular provider, many avoid care because they fear being treated poorly by a healthcare provider due to their race or ethnicity.
A state-wide research study conducted by EVITARUS, a Black-owned public opinion research firm in Los Angeles, and funded by the California Health Care Foundation (CHCF) surveyed 3,325 Black Californians to learn more about their experiences in the healthcare system.
According to the study, “Listening to Black Californians,” Black people across the state reported changing their behaviors and asking less questions in order to avoid being perceived as difficult. The report noted, “More than one in four Black Californians (26%) avoids care due to concerns they will not be treated fairly or with respect. More than one in three Medi-Cal enrollees (35%) and 3 in 10 uninsured respondents (31%) report avoiding care due to concerns about being treated fairly.”
When Michelle Burroughs, director of Community Engagement & Outreach for the Center for Healthy Communities (CHC) at the University of Riverside, California (UCR), heard about the survey, she said she was very inspired that someone took time out to listen to Black Californians. Burroughs knew this information needed to be shared widely in the community, not just in a report online.
“In our spaces in California, let’s start helping our Black community members really apply the information that you learned from this study and make it actionable, so they can change their health narrative,” Burroughs explained in a previous interview. “It’s just going to take us one at a time, to be able to slowly learn the language, to feel comfortable about standing up for ourselves and in some senses, it’s going to take us demanding that.”
Becoming an advocate
With this in mind, Burroughs and her team at the CHC hosted their first community event of the year, sponsored by CHCF called “How Do I…Advocate for Myself and Others?” Held at the Barbara Center for the Arts in Riverside, the workshop welcomed Dr. Glenda Newell-Harris, regional medical director of YesCare and co-author of Focus on Your Best Health, who led a discussion focused on advocacy in the healthcare system.
Dr. Newell Harris’s presentation emphasized three key points: effective communication, savvy navigation and appropriate advocacy. She explained that these three tools are essential for understanding how to advocate for oneself and a loved one.
Part of advocating for yourself is knowledge. Knowledge of what patients have access to (patient navigators), knowledge of patient’s rights, and knowledge of one’s own medical history are crucial to understanding how to navigate the healthcare system. Dr. Newell-Harris highlighted the importance of knowing their medications, family history of illness or chronic diseases, one’s numbers such as blood sugars or blood pressure — all of which will contribute to a patient’s ability to be a champion of their own health.
According to the survey on Black Californians, “The majority of those who were treated poorly because of race or ethnicity prepare for health care visits with prior research (82%), signal to providers that they are educated (64%), and tailor their speech or adopt other behaviors to make the provider feel more at ease (63%). Half of Black Californians (50%) who have been treated poorly minimize questions and concerns to avoid being perceived as ‘difficult.’”
Make your 15 minutes count
Dr. Newell-Harris addressed the shortcomings of the medical system such as the failure of doctors to treat patients equally and the unspoken rule that doctors have a limit of spending 15 minutes with each patient. She encouraged participants in the crowd to be mindful of that by choosing three key questions to ask the doctor in order to make the best use of time. Dr. Newell-Harris also encouraged participants to be assertive.
“Be assertive, but respectful. It’s kind of like when you go to a restaurant. You don’t want to make the person mad who’s serving your food. You don’t know what they’re gonna do with it when they get in the back. But it’s important for you to be assertive,” Dr. Newell-Harris shared.
Throughout her presentation, Dr. Newell-Harris addressed both patients and providers in the room. She reminded current and future providers that they will grow throughout the course of their careers. She shared advice on what it’s really like working with patients and the difference between reality and what they will learn in medical school.
“[In school] they said, ‘If you just listen, the patient will tell you everything you need to know.’ But we don’t listen because we got 15 minutes. We try to get [patients] in and out and we want the questions answered that we want,” Dr. Newell-Harris explained. “
But honestly, if you stop long enough and let the patient talk, they’re telling you what’s really happening to them. So, we need to listen. We need to engage with eye contact as we’re listening. Limit your jargon.”
UCR 1st year medical (PRIME) students join the conversation
Several first-year medical students joined the community workshop and role played scenarios between doctors and patients. The scenario-based activity generated anonymous responses from the crowd about what they observe about the interactions between doctors and patients. The medical students belong to a new program at the UCR School of Medicine called the Program in Medical Education (PRIME) which is designed to “produce physicians who are specifically trained to address the healthcare needs of the African, Black and Caribbean (ABC) communities of Inland Southern California.”
Folu Oyefeso, Destiny Prudhomme, Arturo Chavez, Brooke Malone and Marvellous Osunde were five of the six PRIME students in attendance. As they train to become providers, the program will integrate working with ABC communities in different ways such as developing “community circles” where community members will have the opportunity to learn more ways to advocate for themselves using “standardized doctors” — doctors in training who will participate in doctor-patient scenarios.
Lisa Diggs, a 58-year old educator, joined the community workshop and shared her own experience dealing with gallbladder pain during a visit to the doctor’s office. Diggs participated in the Listening to Black Californians survey and she shared some of her observations of the healthcare system.
“I felt like I was kind of on top of it myself. I felt pain and I asked to go to the gastroenterologist, and I didn’t go. Then later on, I was having back pain and different things. So, I felt like I was being ignored a whole bunch of times,” Diggs explained. Like other Black Californians, Diggs said she keeps all her medical paperwork in order and prepares questions before visiting her doctor. Diggs said that she has always been an advocate for herself and also accompanies family members who need support.
As a mother, wife and daughter, Dr. Newell-Harris detailed her own personal encounters with the healthcare system throughout her presentation. She recalled having to chase after a doctor who refused to perform surgery on her son who had experienced severe stomach pain. She insisted that the abdominal pain was the cause of an enlarged appendix and begged the doctor to investigate further, despite the doctor not taking her seriously.
The doctor finally relented. Dr. Newell-Harris said they removed her son’s appendix in the end and explained that it was the largest appendix the doctor had ever seen in his professional career.
“My son lived. He was hospitalized for three days and he credits me as saving his life. But you have to advocate. You got to be there,” Dr. Newell-Harris stated.
In addition to capturing the experiences of Black Californians in the healthcare system, the survey also asked respondents what solutions they believe could help improve the system for them. Eighty-four percent of participants said it would be important to expand community-based education on how to navigate the healthcare system and advocate for quality care. Seventy-seven percent said it is important to increase the number of Black community health care advocates.
“My fear was, because [the study] was something that was so amazing — I did not want it to die on a website. We wanted to make this actionable. We wanted to take this from the website and be actionable about it,” Burroughs said during the workshop.
“That’s what we’re doing tonight and that’s what we’re going to continue to do. We’re going to have community-based opportunities like this, where we can educate one another and talk to each other; share our lived experiences. Then, also learn tools on how we can navigate and advocate for ourselves and our loved ones.”
The CHC will host another community workshop on how to navigate the healthcare system featuring licensed clinical social worker Leticia Vaca Williams. The event will take place on April 25 from 5pm to 6pm. Additional information can be found here.
This article is published as part of the Commonwealth Health Equity Reporting Fellowship.