Tips to Help You Advocate for Your Health

Health advocacy includes actions related to providing access to care, securing resources, tackling health disparities and inequities, and navigating the healthcare system. Health advocacy matters because it helps people get the services and support they need. It also addresses concerns and barriers to health care.

Navigating the healthcare system, specifically as a Black person, can be challenging. To better understand experiences within the healthcare system, Verywell conducted a survey of over 2,000 Black and White American adults in January 2022. A significant finding from the study is that Black and White Americans have very different experiences with the healthcare system, with Black Americans identifying systemic problems and racism as concerns.

This article discusses your rights as a patient, the experiences of Black and White Americans in the healthcare system, how to handle racism during medical appointments, and how to build relationships with your providers.

Know Your Rights as a Patient

As a patient, you have basic rights, and healthcare providers have a responsibility to uphold them. 

Some of your rights as a patient include:

• Respectful interactions: You should be treated with respect at all times.
• Privacy: As required by the Health Insurance Portability and Accountability Act, you have the right to have your personal health information kept private. You also have the right to obtain your own medical records.
• Autonomy: You should have the final say in decision-making and choosing the treatment that seems best for you.
• Informed consent: You are entitled to information from healthcare providers related to treatments, including the risks.
• Self-advocacy: Understanding your rights as a patient is one method of self-advocacy.

In one study, patients revealed self-advocacy actions that helped them navigate healthcare appointments. Actions noted include being knowledgeable about your symptoms and medical conditions, staying positive, being organized, communicating effectively, and speaking up during appointments.

Learn the Basics

Knowing what to expect is one part of making it through the healthcare system. In addition to understanding your rights as a patient, knowing basic information about your health, family history, and general health checkups can help conversations with your provider go more smoothly.

Research as Much as Possible

Research can increase your awareness to maintain good health. When thinking about your gender, age, race, and family history, you can get a sense of when to get health screenings and checkups. 

Learning about your family medical history can help you identify your own risk factors, allow you to research those conditions, and give you information to discuss with your provider. This can be a great step toward prevention or early detection.

Learn About Your Health Insurance Coverage

If you have health insurance, it is worthwhile for you to research your coverage before attending an appointment. Understanding fees related to your visit can help you plan for costs. Seek information about the cost of seeing a primary provider vs. a specialist, as specialist visits can be more expensive. Having information about your co-pay or deductibles allows you to budget.

If your healthcare provider suggests testing or prescribes a medication, knowing what your insurance will cover and how much you will have to pay can help you talk with your provider about the best, most affordable options for you.

Insurance companies pay for services they deem medically necessary. If something isn’t covered but is essential for your treatment, talk with your healthcare provider about other options or ask them to make a case to your insurance provider regarding why the treatment is necessary for you and why it should be covered.

Encountering Racism During Health Appointments

Verywell’s survey found that Black Americans use the healthcare system as much as White Americans, with 75% of Black and White respondents reporting seeing a healthcare professional in the last 12 months.

However, taking the same action doesn’t mean having the same—or positive—experiences. Due to their experiences with healthcare professionals, Black Americans are less likely to report positive perceptions of doctors, nurses, and physician’s assistants.

When thinking about the healthcare system as a whole, Black Americans were more likely to believe that inequality exists within the healthcare system. A research study noted that Black Americans are less likely to access care for preventive, acute, or chronic needs. However, the study discusses another significant problem that patients face: implicit racial and ethnic bias and negative attitudes of healthcare professionals toward Black patients.

The systematic review (a detailed summary of medical literature) also found that some White healthcare providers view Black patients as:

• Less intelligent
• More likely to engage in risky behaviors
• Less likely to stick with treatment recommendations

These attitudes and beliefs are harmful. Providers can act, or fail to act, based on biases like these. When bias shapes patient care and interactions, and influences recommendations from a provider, quality of care can suffer. Negative health outcomes are one result of inadequate care.

Bias and racism affect Black Americans’ experiences with health care. Half of Black Americans who participated in Verywell’s survey agreed with the statement, “The healthcare system is racist,” while almost one-third (32%) of Black Americans indicated experiencing racism as they navigated the system.

According to Black survey participants, patients experienced racism at different stages of health care but mainly during appointments with their provider. Other activities in which Black Americans encountered racism include:

• Scheduling
• Checking in
• Leaving appointments
• Following up

While many Black Americans recognize people as being part of the problem, most agree that racism is a problem of the healthcare system as a whole.

Racism is dangerous for Black Americans, especially within the healthcare system, as it can hinder or interrupt care. For instance, Verywell’s survey found that Black Americans who experienced racism in health care changed providers (36%), did not make a follow-up appointment (28%), and delayed making a health decision (28%). These interruptions can have numerous consequences for Black Americans and their well-being, as well as their confidence in seeking care.

Find the Right Healthcare Professional

It’s essential to find the right healthcare provider for you. Getting established with a healthcare provider who is a good fit may help you feel more confident about the care you’re receiving.

Here are some questions you might think about when looking for a medical professional:

• What are your medical needs?
• What kind of healthcare provider might you need to see?
• What education, training, and specialties does the provider have?
• Does the provider you’re contemplating accept your insurance?
• Are there reviews for this provider?
• Are they affiliated with a specific hospital system? 

In addition to these practical concerns, it’s important to find a provider who treats you with respect, listens to you, and adequately addresses your concerns. It might matter to you that a provider collaborates and seeks to understand you from a holistic perspective (as a complete person) and how your challenges are impacting your life.

Prepare

Maximize your time with your provider by planning before your visit. Tips to help you make the most of your appointment include:

• Write a list of your concerns and symptoms to share, including how long and how often you experience them.
• Have key information about your family history.
• Create a list of questions you want to discuss.
• Complete intake paperwork ahead of time if you can.
• Arrive early.
• Bring something to help you take notes (e.g., pen and paper, phone).

Common Questions to Ask

Having a list of questions prepared can help you make sure you don’t forget to ask about what matters. Common questions you may want to discuss with your healthcare provider include but are not limited to:

• What could be causing my symptoms? 
• What conditions will we explore? 
• What testing would you recommend and why?
• When can I expect the results from tests?
• What is the prognosis (likely outcome) for this condition? 
• What medications are used to treat this condition?
• What are the side effects of these medications?
• What are the best ways for me to manage this condition? 
• What can I expect with this condition? How might it impact my life and functioning?
• What other medical or mental health professionals should I consider working with to manage this?
• What lifestyle changes and holistic approaches might benefit this condition?

Every person has their own concerns and questions. The important thing is to be able to voice them clearly to your provider.

What Else Should You Consider?

Healthcare visits involve much more than the time you spend with your provider.

To streamline the process, it can be useful to complete any intake paperwork ahead of time if this is an option. If you need to bring medical records from a different provider, give yourself ample time to collect them or have that provider’s information so you can sign an authorized release. This form gives your provider permission to request records from another provider.

Give some thought to how you plan to get to and pay for your appointment. Accounting for how long it may take you to get there, parking, and finding the office can remove some of the stress associated with going to the provider. Checking with your insurance or local agency about your out-of-pocket responsibility allows you to financially prepare for the visit.

In addition to thinking of questions you want to ask, consider your goals for the appointment. Are you looking to get information about a medical condition? Do you want to discuss test results? Keep in mind what you’d like to have accomplished by the time you leave the appointment.

Be ready to talk about your medications and how they are or are not improving your symptoms. This may be the perfect time to discuss options and dosages or to ask for a refill if you need one.

Express Your Needs

Advocating for yourself at healthcare appointments can be challenging, especially because there is a power imbalance between you and your provider.

Here are examples of how you can express your needs during an appointment:

• Tell your provider that you are concerned: You can say something like, “It’s important to me to make sure you understand my symptoms. I want to make sure we’re on the same page about my concerns and how to address them. Here’s what’s on my mind.”
• Ask directly for information or testing you need: For example, “I have a family history of diabetes. I want to know more about the condition and what testing I might need to confirm or rule out a diagnosis.”
• Address your discomfort: You could say something like, “My hope for this appointment is that we can work together to identify and address my health concerns. I want you to know that your words and actions have an impact. Right now, I don’t feel respected or safe due to comments or behaviors that have occurred during this appointment.”
• Ask about how you can formally report issues that jeopardize your mental or physical safety: If you feel comfortable, you can ask another professional in the office about how to provide feedback on your experience.

In the end, if you feel like a healthcare provider isn’t listening or addressing your concerns, you have the right to ask questions, request testing, and even change providers.

When to Seek Out a Second Opinion

You want to feel sure and supported when seeking information and making decisions about your health. Sometimes this means getting another opinion.

You may consider getting a second opinion if:

• You feel uncomfortable with your provider.
• You experience racism during an appointment. 
• Your provider isn’t listening to you or taking your concerns seriously.
• Your provider doesn’t request adequate screening and testing.
• You are adhering to treatment but still feel unwell. 
• You are diagnosed with a rare disease.

You are the best judge of whether something doesn’t feel right. If talking with another provider might be better for you, do so. Getting a second opinion is a way to get a fresh perspective on your symptoms, options, and treatment plan. It may also be an opportunity to find a healthcare provider who is a better fit for you.

Summary

“Health advocacy” is a term that describes activities that seek to improve the healthcare system for everyone. People of color, especially Black Americans, generally have different experiences within the healthcare system than White people due to systemic problems, racism, and more.

Verywell’s survey provides insight into challenges faced by this community, including racism throughout the medical process and systemic healthcare issues impacting their care. Patients can become better advocates for themselves by understanding their needs, knowing their insurance policy, finding the right professional, and learning ways to prepare to get the most out of their appointments.

A Word From Verywell

Navigating the healthcare system as a Black American has challenges. Learning to advocate for yourself can help you feel more empowered on your health journey. Educating yourself, finding the right professionals, and speaking up, even when it’s hard, can help you take charge of your care. After all, your health and well-being are the top priority.