I recently came across an interesting and well-written article about the dynamic involved in a patient’s relationship with their doctors and how to advocate for oneself in getting the care that you need. We’re excerpting that article here as a helpful complement for our clients who are treating for injuries – or for any other medical issue – so that they can get the care that the need and deserve. This article is by Allie Volpe and was published in September 2023, in VOX. While the article was spurned on in an attempt to address racial bias in receiving medical care, the steps it lists for making sure that you are getting the care that you deserve are applicable to anyone who needs to advocate for themselves in this regard.
Steps that may be helpful include:
Make a plan for your medical appointment before going in;
Bring a friend if doing so will prove helpful to you;
Create a record of the visit immediately afterwards;
Ask Clarifying questions;
Push back if you feel like you aren’t being heard or given adequate time;
Obtain a new doctor if necessary.
The link to the entire article is:
In his medical school classes at Washington State University, Joel Bervell was constantly reminded of health care disparities during lectures, like how black and brown people were more likely to die of Covid-19 and how where you live can impact life expectancy. But he was never taught why these inequities exist in the first place. So Bervell did some research on his own and began creating videos on TikTok explaining race bias in medicine and how race intersects with medical care. “A lot of my followers were saying things like, ‘There’s problems out there, what can I do to actually help myself out?’” Bervell, now a fourth-year medical student, says.
His tips, shared in a 2022 video, became a jumping-off point for Bervell to empower his audience. “Even if you don’t have the medical background,” he says, “you know your body better than anyone else.” Discrimination can look like a medical professional making you feel inferior, less-than, or outright unsafe because of your race, weight, sexual orientation, education level, physical disability, or age. Providers may also dismiss your pain by insisting your symptoms are a byproduct of psychological factors or that you’re “dramatic.”
Speaking up at the doctor’s office can be difficult for many people because of previous discrimination or dismissal by medical professionals. According to a 2022 Verywell survey, one in three Black Americans said they experienced racism within the health care system. Twenty-nine percent of women ages 18 to 64 reported that their doctor had dismissed their concerns, according to the 2022 KFF Women’s Health Survey. Nearly a quarter of LGBTQ+ Americans said they had been blamed for their health problems, a 19th News/SurveyMonkey poll found last year. Two-thirds of study participants who were treated negatively in the past because of their weight said they experienced weight stigma from doctors, per a 2021 study. Additionally, neurodivergent patients report experiencing lower-quality health care due to poor communication, increased anxiety, and sensory sensitivity, research suggests.
“Marginalized people can really start to blame themselves for our mistreatment and think that either we deserve it or we shouldn’t push back,” says board certified patient advocate Ragen Chastain.
Regardless of your past medical experiences, patients can take greater control over their interactions with providers, experts say. Here are some ways to advocate for yourself at the doctor’s to ensure you walk out of the exam room with a clear understanding of your health and a concrete path forward.
Make a plan before your appointment
To prepare for your visit, experts advise making a list, either on your phone or a hard copy, of everything you want to discuss with the provider, in order of importance, so you can ensure the doctor is addressing all of your concerns. You can also write out your goals for the appointment, Chastain suggests. Maybe it’s to get a diagnosis, maybe it’s to get a prescription refilled.
You’ll want to be as specific as possible when describing any symptoms, so try keeping a symptom diary in the days leading up to your appointment, says Haley Collins, a nurse practitioner with FOLX Health, a digital health care provider for the LGBTQIA+ community. If you’re looking to get your migraines treated, keep track of what time you had a migraine, on what day, and the context of the migraine. (What did you eat? Were you stressed?)
Have a brief overview of your medical history available, including any chronic illnesses, medications you’re taking, when you last had blood work, and any relevant medical issues within your family, especially if it’s your first visit with the provider. “If you have a significant family history of diabetes or stroke,” Collins says, “that’s usually pretty important, particularly in … your immediate family.” It’s also helpful to have access to any data you keep track of at home, like blood sugar or blood pressure.
While some medical professionals caution against googling their symptoms, Chastain encourages responsible research. Reading studies or other trusted online medical advice can help inform your questions for the doctor. (Be wary of any content on TikTok or other forms of social media that aren’t created by someone with a medical degree — or will soon have a medical degree. Any content encouraging a self-diagnosis should also be taken with a huge grain of salt.)
While you’re making an appointment, whether it’s for a check-up or a colonoscopy, ask for the price of the visit, both with and without insurance, says Cynthia Fisher, the founder and chairman of PatientRightsAdvocate.org. “All patients have the right to know all prices from hospitals in advance of care and we have the right to compare our prices to other insurance plans if we have insurance,” she says. “Even if we have insurance, we have the right to pay the discounted cash price, which is oftentimes nearly 40 percent lower than insured rates.”
Bring a trusted friend or family member with you to the doctor’s
Patients are able to bring a relative or friend with them to their medical appointments. HIPAA allows a doctor to talk about a patient’s health, treatment, and payment with the patient’s spouse, family members, friends, or anyone else the patient gives permission to hear about their medical care. “People are entitled to an advocate,” Chastain says. This can be helpful to get an extra set of ears as well as another perspective for questions. Choose someone who makes you feel supported and will effectively communicate on your behalf, Chastain says. “Typically when I work with people, I have a physical signal that they give me when they want me to talk,” she says. “It might be tugging their ear lobe or something like that, so that I know this is where they want me to jump in.”
Your doctor may ask your support person to leave the room at some point during the appointment, Collins says, to ensure you can speak freely about sensitive issues.
Take a detailed record of the visit
Experts stress the importance of keeping track of the content of your appointment. Either keep notes on your phone, in a notebook, or ask your provider if you can record audio of the visit. “Ask for permission before you record,” Bervell says. “By recording a conversation, you can listen to it and say, there’s something I want to ask a question about. You can follow up on MyChart or some other way to reach out to the physician.” MyChart is an online portal for patients to message their providers and view some medical records. Interacting with a medical professional this way can be helpful for patients who are not comfortable talking on the phone, Collins says.
At the end of the appointment, you can review your notes with your provider to ensure you fully understand what was discussed, Chastain says. You can say, “This is what I understand you said…” Make sure you’ve asked all of your questions and are clear about next steps.
Ask the provider to explain their decisions
Bervell says patients should feel empowered to ask medical professionals to show their work. “Ask ‘What is your differential diagnosis?’” he says. A differential diagnosis is a list of potential conditions that fit your symptoms. For a patient with shortness of breath, the cause can range from asthma to cancer, Bervell says. If a provider orders a test to rule out any of these issues, patients should know why. Inquiring about a differential diagnosis lets a provider know you want to hear every potential outcome and options for next steps, Bervell says. Don’t be afraid to ask if there are other options for diagnoses and treatments, too.
You can defer to the provider’s expertise when asking for more clarity, Chastain says. Try saying, “I’m not a doctor, so I don’t quite understand this, but I’d really like to understand more. Can you tell me where you got that conclusion from?” or “Can you tell me more about your diagnosis or why you chose that treatment plan?” You can also ask the doctor if they have any research or other materials you can read about your condition or medication.
Utilize the time you have with the doctor
The average primary care provider visit clocks in at 18 minutes, according to a 2021 study. To make the most of this time, start by giving your nurse a detailed reason for your visit, Collins says. Oftentimes, the information you provide on the phone to the employee who makes the appointment doesn’t get passed along to your providers, she says. But the nurse has a direct line of communication with both you and your doctor. Nurses may be able to answer your questions, too, Collins says, so don’t be afraid to ask them during intake or after your appointment, while you’re checking out.
If you sense the doctor is in a rush to end the appointment, or their hand is on the door to leave and you have other topics to discuss, tell the provider you still have more questions and you’d love it if they sat down with you for a few moments more, Chastain says. “Let them know you see that they’re trying to run out of the room and that is not going to work for you,” she says. Next, recap the appointment: “You’re saying my diagnosis was X and your treatment plan is Y and you’ll be calling in this prescription.” Then ask about any next steps. You can also take this time to review the list of questions you prepared before the appointment to ensure you addressed all of your concerns.
Before ending the appointment, Bervell suggests asking your provider three questions. When should I see you next? Are there any medications I should pick up? What are the signs that my condition is worsening and what should I do if that happens?
There may be questions you forgot to ask or additional concerns that arise after your appointment. Don’t hesitate to follow up with your doctor through your online patient portal or call the office.
Push back if you need to
In the event your doctor shows any sort of racial or weight bias, misgenders you, or dismisses your pain, you should speak up. Again, this can be difficult for people who have experienced stigmatization or have been brushed off before. However, your self-advocacy may lead to better outcomes for future patients, Collins says.
There are a few things you can say to a provider if you are experiencing fatphobia, homophobia, transphobia, racism, or other forms of discrimination or if the doctor is minimizing your experience, according to experts.
- I practice weight-neutral health, so I like to focus on my health and not my body size.
- Actually, my pronouns are…
- I’ve read that people of color tend to get less pain management and I just want to make sure that’s not happening here.
- Can I speak to another doctor about this?
- What would you do for a thin person in this situation?
- I feel you’re not taking my concerns seriously.
- Would you document in my chart that I requested this test and you denied it?
- I understand you’d like to know about my history, but I’m really concerned about…
It may not be easy for those with limited access to health care providers to push back against their doctor, Collins and Chastain note. For example, those in rural areas may only have one or two practitioners or specialists available. Or it may be difficult to get an appointment with another provider. “They may need care from this doctor,” Chastain says, “so they might choose how to push back or not to push back based on that.” If your goal for the appointment is to get a prescription filled and move on, you may want to let the doctor proceed and not speak up in response to insensitive remarks in order to get the result you want.
Find another doctor, if necessary
However, if the provider is not treating you with respect, is dismissing your discomfort, and is focusing on stereotypes, find another doctor, experts say. You can ask if there is another medical professional within the clinic you can see — perhaps one who shares a background and identity with you, Collins says — if you want to stay within the same practice.
To help guide your search for a provider at a new facility, check out reviews on Zocdoc and Healthgrades. You can also ask friends and people in your community if they would recommend their doctor.
Before making an appointment, ask the office staff questions about the provider, Chastain says. When you call, you can say something like, “I’m looking for a new practitioner. I need a doctor who is [weight neutral/anti-racist/sex worker positive/trans positive]. Is there a doctor there who meets that criteria?” In some states, such as South Carolina and Mississippi, medical providers can decline to treat patients based on their religious beliefs. If you live in one of these states, ask a new provider about their policy, Chastain says: Say, “I know in this state, doctors are allowed to bring their religious beliefs into consideration when treating transgender and non-binary people. Is that something that you do? And in what way?” You can remain anonymous or even have a loved one make the call for you if you’re nervous.
Sometimes it can be easier to advocate for a friend than yourself, Chastain says. So consider your body a friend that deserves your support both in and out of the doctor’s office. “We’re the CEO of our body,” she says. “So we’re going to walk in there to support our body.”