129. Advocacy and Equity in the Healthcare System with Dr. Nicole Rochester
When you’re ill, you hope that you will be cared for with compassion, consideration and competence. But that’s not always what happens.
People of marginalized identities often confront racism, bias and lack of accountability when interacting with the medical system.
These experiences compound the emotional and physical impacts of illness, and it can be difficult in those situations to advocate for yourself in order to get the care you need.
Dr. Nicole Rochester joins Erica to discuss health advocacy and why it is necessary for creating health equity.
In this article:
What a health advocate does
Why we need health advocacy and equity
How bias and prejudice impact care and patient outcomes
Steps to take to advocate for yourself or your loved ones in healthcare settings
Keep the dialogue going:
Concepts are better explored in community. Actions are more lasting when taken alongside other imperfect allies. Connect with a cohort of entrepreneurs and changemakers at the intersection of values and visibility.
Join us at pauseontheplay.com/community
This article is based on a Pause On The Play podcast episode called Advocacy and Equity in the Healthcare System with Dr. Nicole Rochester
Meet Dr. Nicole Rochester
Dr. Nicole Rochester is a pediatrician, a health advocate, a TEDx speaker, a health equity champion and the CEO of Your GPS Doc, LLC. Her company helps individuals with chronic illnesses and their family caregivers navigate the healthcare system.
She describes herself as a risk-taker who is committed to diversity, equity and inclusion, and to anti-racism, a mom, a wife, a physician and always a work in progress.
What Does a Health Advocate Do?
Dr. Rochester explains that health advocates, also known as patient advocates, are professionals who help patients and their family caregivers navigate their medical care and the medical system.
She helps people understand medical terminology and acts as a liaison between her clients and their healthcare teams.
Her work can also include helping her clients communicate effectively back to their teams so that healthcare professionals understand their concerns, and ensuring that those concerns are escalated appropriately when necessary, which she says is all too often.
Health advocates may also assist with coordinating care among a group of providers managing a patient’s care, getting second opinions, helping vet hospitals, physicians and other facilities, and helping clients determine what is the most appropriate place of care for themselves or their family members.
Erica says that in her recent negative experience of getting care for a kidney stone, she had no idea that a patient advocate could be there to “be that go-between to acknowledge when I received care that was unacceptable, why it was unacceptable, why it shouldn't happen to someone else and what needs to happen next.”
From Pediatrician to Health Advocate
Erica asks Dr. Rochester about her move from clinical medicine to becoming a health advocate and starting her company.
Dr. Rochester tells the story of her late father’s chronic health issues and eventual decline. “It became very obvious to my two older sisters and I, that he just could not continue to manage his own health on his own.”
She and her sisters were able to coordinate together on his care, and Dr. Rochester was the obvious choice to help with his medical care.
Dr. Rochester initially chose not to introduce herself as a doctor to his providers.
“I really just wanted to be his daughter but within a few encounters, just seeing that he was not receiving appropriate medical care and seeing that when I would speak up as his daughter or when I would try to offer information that was extremely helpful to his physicians and the other members of his team, and I was essentially dismissed or silenced; then I had to start flexing my doctor muscles.”
And as soon as she did, the same information she had shared as his daughter was suddenly relevant and important, providers had more time for them, and her father’s care improved.
As his illnesses progressed, Dr. Rochester’s knowledge, not just of medicine, but of how the medical system works–such as knowing the right people to escalate to, or in her words, how to complain effectively–“afforded my dad a huge advantage.”
Having witnessed how her status as a doctor and knowledge of the institutions of the medical system impacted her father’s care, knowing that millions of other family caregivers didn’t have that advantage, “I just couldn’t unsee that.”
After her father passed away in 2013, Dr. Rochester made the difficult choice to leave the pediatrics practice she loved to pivot into advocating for others the way she had advocated for her father.
Erica shares that her father passed away from leukemia when she was only twelve, and that “there were so many questions that I don't know if anyone knew how to ask it, who to ask it to, and what the right answer was.”
Dr. Rochester agrees that it’s difficult in any industry when you don’t know what you don’t know, “but when it comes to medical care, that can be your life.”
Advocacy and Equity
Erica asks if there are certain demographics that need healthcare advocacy more than others, to which Dr. Rochester replies, “Unequivocally, yes. Absolutely.”
She continues, “If you are a member of a community who historically, and even now today continues to receive disparate care in the healthcare system, you need [health advocacy] more than anyone.”
In those groups, she includes racialized people as well as those who are under-resourced in terms of income, members of the LGBTQ community, and people with disabilities as among those who need health advocacy and equity.
Dr. Rochester explains that health equity means ensuring that “everyone has what they need in order to achieve their best health.” She also stresses the importance of distinguishing equity from equality.
“Health equity is acknowledging that because of structural racism, because of the bias that healthcare professionals have–that we all have, that we cannot get rid of, that’s part of our brain, literally–and because of the differences in opportunities that, in our country are largely along race lines, that no, you don't give me what everybody else gets. You give me something different. And in many cases, it may be more.”
As an example, Dr. Rochester highlights obesity rates in Black communities, and how those rates are tied to access to fresh foods, to lack safe spaces to walk or exercise, and “when we begin to really look at that, then you begin to understand why equity means that certain communities actually need more.”
Erica adds, “Equity is the vessel that gets you to equality. Giving out the same thing to everybody doesn’t help when there are people that are at a deficit or a surplus.”
How Bias and Prejudice Impact Care
The inherent biases in providers and the wider medical system that marginalized people come up against affect everything from the perception of illnesses like diabetes being their own “fault,” to, as Dr. Rochester notes, whether providers expect that patients will comply with treatment guidelines.
If a provider doesn’t believe a patient will comply, they may not offer that course of treatment, even if it is the most medically appropriate.
She says, “There are studies after studies after studies that show that, particularly with Black people, the care that is provided is different. It's not aligned with the guidelines and the standard of care that have already been established in medicine. And a lot of that has to do with bias and prejudice.”
Erica tells her story of mistreatment and medical mismanagement when she had a kidney stone followed by an infection. She was treated dismissively by the on-duty nurse, discharged after a procedure without proper medication and follow up, then when she went back to the emergency room with a post-procedure infection, she was treated as though she was drug-seeking.
She says, “I’m in immense pain, I don't know what's going on, and I'm the one that's being treated like I'm the person that did something wrong…I just want to be able to function. I want to not be vomiting. I want to not be in pain. And I had no idea what to do.”
And Erica says she felt like if she complained, not only would she not be heard, she wouldn’t get care at all. “Then they're just going to ignore me. Then they won't come back into the room. Then they're just going to act like I'm not here.”
What Can You Do When You Feel Like You’re Screwed
Stories like Erica’s are unfortunately common. There are inherent power differentials at play when interacting with the healthcare system where, no matter what the brochures say about patient-centered care, the patient is at the bottom of the hierarchy, particularly if they are of a marginalized identity.
Meanwhile, Dr. Rochester notes, patients are in a very vulnerable position and advocating for yourself when you’re ill is incredibly difficult.
That position, she says, has been made more difficult because of COVID, because now most people have to enter the emergency room or doctors’ offices alone.
When interacting with the healthcare system, ideally have someone with you. Dr. Rochester says this isn’t only when you’re headed to the emergency room, but for almost any appointment outside of the most routine checkup.
If having someone with you in-person isn’t possible, Dr. Rochester recommends having someone on a video call. That person can act as a witness, but they can also step in for you in the event you aren’t able to do so yourself.
And she says, while it is absolutely understandable to be angry in the face of substandard or negligent care, it can have a significant negative impact on your care going forward. “Later is when you can file that complaint and really tell them about themselves.”
Dr. Rochester recommends trying to find some common thread of humanity. “This is not to make excuses, but what has happened is because of the insurance issues and reimbursement and the challenges and the volume and COVID and burnout and all these things, people who normally are good people, they’re stretched to their limit. But unfortunately, patients and family members suffer as a result of that.”
If there is something you can say to reset the tone, whether it’s an anecdote or even asking them if they’re having a tough day, can dramatically change the energy of your interactions.
“I hate to even tell people to do this because it makes me angry that we have to do these types of things. But sometimes those things just kind of remind the person like, oh, this is actually a human being that I'm talking to.”
Two Key Things That Will Help You Navigate Healthcare
Dr. Rochester has two main pieces of advice for navigating the healthcare system, whether for yourself or for a loved one.
The first is a mindset shift.
“You are the expert for your body, your health condition, and if you are a family caregiver, you are the expert for that family member.”
Dr. Rochester says that even as someone who has decades’ worth of education and experience in pediatrics, the experts for her patients were still their parents.
She adds, “We have this saying in medicine that, you know, sometimes the patients don't read the textbooks, meaning sometimes patients will present in a way that is different than what we learned, what we read about, and that doesn’t mean that you don’t have what you think you have. That doesn’t mean you’re fine.”
Her second piece of advice is to prepare for all of your doctors’ visits.
She says you need to be knowledgeable about any conditions you have, be able to provide details of medications you take and know how to effectively communicate about your symptoms.
She recommends writing down your recollection of how symptoms developed to avoid confusion and writing down your questions and concerns you want to address so you don’t forget, and taking notes during your visit or asking permission to record your conversation.
For every encounter with a medical professional that isn’t an emergency, Dr. Rochester suggests treating the preparation like homework, and your grade is your health.
Guest Contact and Bio:
Dr. Nicole Rochester is a pediatrician, health advocate, TEDx speaker, health equity champion, and the CEO of Your GPS Doc, LLC, an innovative company that helps individuals with chronic illnesses and their family caregivers navigate the healthcare system. Dr. Rochester was inspired to start her company after caring for her late father and witnessing the complicated healthcare system from the other side of the stethoscope. A native Maryland resident, Dr. Rochester is a proud graduate of Johns Hopkins University and the University of Maryland School of Medicine. She is happily married and the mother of two amazing young adult daughters.
Instagram: @theGPSDoc
Dr. Rochester’s TEDx Talk: Overcoming Invisibility: the Doctor-Patient Relationship
Keep The Dialogue Going
Concepts are better explored in community. Actions are more lasting when taken alongside other imperfect allies. Connect with a cohort of entrepreneurs and changemakers at the intersection of values and visibility.
Join us at pauseontheplay.com/community
Resources:
Hood Feminism: Note from the Women That Movement Forgot, Mikki Kendall