Advocating for Your Health: Tips from Four Experts
By Grayson Schultz
In health care, there is often an invisible power dynamic that favors providers and administrators. It can be difficult to navigate, especially for patients from already marginalized groups. But there are strategies and tips you can employ to take an active role in your health and maximize your care.
These patients and health activists—Sheila Lineberry, a 65-year-old African American woman; Jaime Sanders, a 42-year-old Black woman of West Indian American descent; Jay Botsford, a 38-year-old white genderqueer person; and Ronni Hayon, MD, a doctor at the University of Wisconsin-Madison who specializes in LGBTQ+ care—share their experiences and advice for advocating for your rights at doctors’ appointments, emergency rooms, and the pharmacy.
At the doctor’s office
A compassionate and thorough provider can make all the difference in your health and quality of life. But finding one isn’t always easy. Clinicians see dozens of patients in one day and may not have the time, resources, or training to fully address your unique concerns. However, there are a few things you can do to make the most out of your appointments.
Have patience—and a plan. Patience is key, “especially if we are meeting you for the first time,” says Dr. Hayon. Short appointment times means providers aren’t always able to learn as much about you as they need to.
Having a plan is crucial to maximizing your time with a provider. Preparing in advance allows you to be “clear about what you want and need upfront,” Jay says. You can also practice “trying to redirect back to why you’re actually there—if you’re there because of chronic pain, we don’t need to talk about your [identities].”
Dr. Hayon says that it’s important to let your providers know your goals. “Depending on someone’s diagnosis, getting to a 0/10 pain score may not be a realistic end goal. However, something more specific, like wanting to control pain enough that you can take a walk three times a week, or get six to eight hours of uninterrupted sleep, may be more achievable.”
Bring support. When Sheila, who has migraine, moved to West Virginia, her new doctors were unsatisfied with her medical records and re-diagnosed her with “nerves.” It took bringing in her husband for her to get the proper care. Unfortunately, this was not an isolated incident. “Take someone with you who can express your pain and what you’re going through,” Sheila says.
Jay agrees, noting that it can be incredibly helpful to have someone of a dominant identity (e.g., cisgender, white) with you as well, because providers are “just going to listen to the person with a dominant identity more.”
“Make sure you’ve had a conversation with them [the support person], about what role you want them to take,” Jay also advises.
Ensure accuracy in your medical records. During a gynecological exam several years ago, a doctor was unsure about testing Jay for the human papillomavirus. Although the doctor was supposed to be competent in transgender care, her questions made Jay uncomfortable. Instead of asking, “When was your most recent sexual interaction with someone who has a penis?” she instead asked, “When was the last time you had sex with a man?” Jay asked some clarifying questions, and the doctor responded, wording the question even more inappropriately and in a frustrated tone.
Unfortunately, Jay later discovered the provider put an odd diagnosis in Jay’s chart; it is unclear whether it was retaliatory.
If, like Jay, you experience someone adding something to your chart that isn’t accurate, you can contest it and ask that it be corrected. Remember, too, that your medical records are yours—you can always request to see them.
Use your rights. It’s also important to know that you can say “no” to providers and fire them, if necessary. “There will be other providers that folks can help you find,” Jay says. You have the right to complain, both within the health system and to the state licensure board. If complaining or holding your own in the exam room changes your care at all, you “have other ways of advocating around that person,” Jay adds. Talk to the clinic manager, get the nurse manager, call the patient care line, send a letter to the CEO of the company, or go to the ombudsperson—a public official designated to be a patient advocate. (More tips on your rights can be found in the article on page 30.)
At the hospital
In an emergency room or urgent care setting, you’re dealing with a whole new set of health care providers who are unfamiliar with your personal situation. These people might also not be specialized enough in your specific condition and are often focused primarily on preventing life-threatening situations.
Keep a binder or other document with key medical information. Consider having a copy on your person and an electronic version that key people in your life can access. Include important things like insurance information, current medications, allergies, procedures, and the providers you see regularly as well as the diagnoses they see you for. Jaime always brings one with her. “This binder is my advocate,” she says.
In addition to the binder, you could also create a one-sheet “summary” document to bring with you, highlighting the most crucial information relating to your health for doctors to reference quickly.
Have your doctor call ahead. Your provider may be able to call the ER ahead of your arrival to have you admitted and treated faster and more effectively. This can often help you navigate issues around protocols and wait times; it can also help you avoid unnecessary testing or irrelevant treatment recommendations. Talk to your provider about their comfort level with this beforehand.
At the pharmacy
Pharmacists can refuse to fill medications if they have safety concerns (in several states, they also have the right to refuse to fill a prescription based on moral and religious grounds.) While it’s important for pharmacists to be able to act as a safety net to prevent drug interactions, serious side effects, or adverse events, pharmacists don’t often know the full medical history of the patient—which can result in frustrating situations.
Stay calm. Try to keep your cool if your pharmacist has questions, even if they’re about possibly misusing medications. Reacting with strong emotions tends to elicit more negative reactions from those in power.
Jaime recalls a time when she relied on a nasal spray for quick relief. “I wasn’t addicted to [it], but I was dependent on it because it got me through the day,” she says. The pharmacist said, “I notice you’re filling this like every 30 days. Are you okay?” The inference was that she was misusing the medication. Jaime said, “No, I’m not okay,” and explained the situation.
If the pharmacist still isn’t listening, ask your provider to call on your behalf.
Bring a list of your other medications. Inside your aforementioned binder should be a list of your medications, which should help the pharmacist have a better idea of your treatment plan and the full scope of your health situation.
Be as proactive as possible. Request refills early or use autofill services. Dr. Hayon suggests patients ask providers to prescribe 28-day supplies of medication. “This means that your refill will always be on the same day of the week, rather than falling on weekdays some months and weekends other months,” Dr. Hayon says.
If you employ all these tips and strategies and still feel you’re not getting adequate or competent care, remember: it is not your fault. While you have the most at stake in your care, ultimately, providers are responsible for treating their patients effectively and compassionately. Consider finding a new provider or, if you have the energy, filing a complaint.