Finding a provider who shares your same race and/or ethnicity is a priority for many. According to a University of Pennsylvania study published in 2020, patients across multiple racial and/or ethnic backgrounds preferred health care providers who shared their same race and/or ethnicity. However, depending on where you live, finding a provider who has the same racial and/or ethnic makeup as you can be very difficult. Seeking care for a rare condition, which often means having few options to begin with, can make this even more challenging.
Having a health care provider who looks like you can mean different things to different people. For some, it may lead to a stronger sense of connection or the belief that both the patient and provider have shared life experiences. If patients feel more connected to their provider, they may be more willing to openly communicate about their health and health care experiences as well as trust and subsequently follow their provider’s recommendations, which could lead to better health outcomes. Unfortunately, not every patient will experience what it is like to have a provider who shares their same race and/or ethnicity because the field of medicine isn’t as diverse as the population in which it serves.
Thinking about cultural competency
Many assume providers who look like us are the only ones who can understand our specific needs, and that others may be prejudiced, but this isn’t always true. Extensive research has shown that biases can exist in anyone. It’s okay if your health care team doesn’t always look like you — what’s important is how they see you as a patient and how you feel about the care you receive. Part of creating a better health care system requires learning from and about others, including those who look like you and those who don’t. This can be especially important for rare disease patients to consider, since many with rare diseases will have few options when seeking providers with experience treating their condition.
You may want to begin by figuring out if you have health insurance. Your coverage status may dictate the next steps you take in searching for a provider. If you have health insurance, you can check out your insurance carrier’s provider directory for an in-network physician to ensure you don’t go out of network and risk having to pay higher costs. This information can be found by searching your health insurance carrier’s website and/or app, if applicable, or contacting them directly by phone. If you do not have health insurance, check out eligibility requirements for getting coverage through your employer, the Health Insurance Marketplace or your state Medicaid program.
You can also check out a few new online tools like HUED and Health In Her Hue to find culturally competent providers in your area. Both are user-friendly apps that connect you with vetted health care professionals in a matter of minutes and they are free.
Tips for evaluating cultural competency
As you search, consider not only your health care needs, but your personal ones as well. If English is not your primary language, perhaps you identify providers who can provide translation services during visits, follow-up and other correspondences. You may want a provider who is knowledgeable of your particular religious, spiritual or cultural beliefs. Moreover, you need someone who not only can sympathize, but also empathize with you. It is one thing to understand a patient’s experience from your own perspective, but having the ability to put yourself in the patient’s shoes and understand what it is really like to live with a rare disease can be very impactful.
Once you have a few names, do your research and look up your potential provider. Take the time to learn about where they were educated, trained, how many years of experience they have and possible board certifications. If applicable, take a look at the provider’s website. Is it diverse? Does it provide information in other languages? Read patient reviews or articles the provider may have published, and remember to take notes, including questions. Do not hesitate to call and ask for a consultation. Some providers may be open to speaking with you about becoming their patient. You may even have the option of meeting virtually, if in-person visits are not an option.
Keep in mind that you have the freedom to speak with as many providers as you want and you reserve the right to change your mind if things do not work out. If you are able to meet in-person with a provider, pay attention to how you and the provider interact. Think about what makes you feel seen and respected and then ask yourself whether you believe the provider’s goals aligned with your needs. Did you feel that your concerns were taken seriously? Was your provider personable? Did they take the time to listen and offer an opportunity for follow-up? Did you see diverse faces employed by the practice from administrative personnel to practitioners?
The most important thing
No one is perfect and treating a rare disease can pose more issues than treating patients with more common disorders, so it’s important to acknowledge those providers who are genuinely trying to connect and care for you. If there is a problem and you articulate it to appropriate personnel, give them a chance to rectify the situation. We all deserve grace as we continue to navigate the ups and downs of life and managing a rare disease.
Lastly, remember that everyone is different — so what you need as a patient may be different from the next person. The most important thing is to develop a healthy patient-provider relationship where there is trust, respect, open and honest communication, support and feelings of safety.
Kimberly Ramseur is a Senior Policy Analyst and the creator of Rare Melanin.