How to Advocate for Yourself in the Healthcare System
Physical Health
Navigating through the maze of healthcare is confusing, even for those with a healthcare background. With some preparation and practice, you will be ready to advocate for yourself. Continue reading to learn more about how you improve your ability to communicate your needs to your healthcare providers.
Know Your Rights
Many organizations have a Patient Bill of Rights that defines what you can expect. Organizations that may have a Patient Bill of Rights include insurance companies, doctor’s offices, and hospitals. Some organizations may call this document patient’s rights and responsibilities. These rights are designed to help you with the following:
- Taking an active role in improving your health
- Building stronger relationships with your healthcare team
- Defining your rights regarding payment of services
- Defining your right to receive care that is respectful and without discrimination
- Protecting your health information
Check with your healthcare provider’s office or the institution you’re receiving care from to find out more about your rights as a patient and the responsibility of your healthcare providers.
Educate Yourself
Learning more about a disease that affects you or the way your body works can help you take an active role in your health and help you make informed decisions.
Improve Your Health Literacy
One of the best ways to advocate for yourself is to improve your health literacy. Your personal health literacy refers to your ability to find, understand, and use health-related information. If you have low health literacy, you may have a higher risk of worse health outcomes.
Even though low health literacy is a risk factor for poor health outcomes, it’s still common. In the US, it’s estimated that about 1 in 3 adults have basic or below basic health literacy. The prevalence of limited health literacy is higher in some groups, including:
- Non-whites
- People with low socioeconomic status
- Older adults
- Non-native English speakers
Even people who can read well and feel comfortable using numbers can have problems with health literacy in certain situations. When making health-related decisions, it can be challenging to understand:
- Unfamiliar medical terms
- How your body works
- How to interpret statistics to weigh your specific risk of a disease or outcome
- Understand the risks and benefits of a specific treatment or activity
You can improve your health literacy by doing the following:
- Ask questions when you don’t understand something
- Repeat what your healthcare provider tells you in your own words
- Use a professional interpreter when needed (not a family member)
- Ask for health-related materials in your preferred language
- Take notes during your appointment
- Bring a friend or family member with you to appointments
Find Reliable Online Health Information
During your journey to educate yourself about your health, you may search for health information outside of your healthcare provider. About 2 out of 3 people who use the internet will use it to search for health information. Most people use a general search engine, such as Google, instead of a dedicated health website for their search.
You can find a lot of health information online — including this article! Online health information can be very helpful. Studies have found that seeking online health information can improve your satisfaction in your care, involvement in health-related decisions, communication with your healthcare team, and your quality of life.
While online health information can be very helpful in your healthcare journey, inaccurate or misleading information may lead to negative consequences, such as:
- Unnecessary appointments
- Delays in your care
- Unnecessary changes in your treatment
- Harmful treatments
- Increased healthcare costs
- Increased anxiety
- Mistrust of healthcare providers
To avoid the potentially negative consequences of online health information, it’s important to learn how to identify reliable health information. You can typically rely on health information found on the following websites:
- Government websites — including the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH) and the U.S. Preventative Services Task Force
- Medical organizations — such as the American Heart Association, the American Diabetes Association, the American Cancer Society, The American College of Obstetricians and Gynecologists, American College of Cardiology and the American Association of Clinical Endocrinology
- Hospitals — including the Mayo Clinic, Cleveland Clinic, and Johns Hopkins Medicine
When you’re searching for health information outside of the websites above, you should be aware of red flags that the information isn’t trustworthy. Red flags that health information may not be trustworthy include the following:
- You can’t find who wrote the article
- You can’t find references (where the information came from)
- The purpose of the health information is to sell a product
- The information is old or out of date
- There are sensational claims such as “miraculous cure”
- There are multiple spelling errors or bad grammar
If you’re unsure of something you read online, the best course of action is to discuss it with your healthcare provider.
Find the Right Healthcare Provider
It’s important to find a healthcare provider you can trust because they will likely be involved in your care for a long time. Your primary care provider (PCP) is the provider you see for most health-related problems that aren’t an emergency. A PCP is often a medical doctor but may be a nurse practitioner or a physician assistant. There are several types of PCPs, such as:
- Family medicine physician — a doctor who specializes in treating children and adults of all ages
- Pediatrician — a doctor who specializes in treating newborn babies, infants, children, and adolescents
- Geriatrician — a doctor who specializes in treating older adults with medical problems related to aging
- Internist — a doctor who specializes in treating many different medical problems in adults
- Obstetrician/gynecologist — a doctor who specializes in treating women of childbearing age
Choosing the right doctor can be difficult. You should look for a doctor with the following characteristics:
- Specializes in treating other people like you
- Treats you with respect
- Listens to your concerns and opinions
- Encourages questions
- Explains things in a way you can understand
So, how do you find a doctor with all these characteristics? You can start by asking your friends and family for recommendations. Your health insurance is another good resource for primary care physicians available in your area. Finding a primary care physician through your insurance can help you make sure you pay the lowest out-of-pocket costs for each visit. When you identify a few primary care physicians that you’re interested in, you can learn more about your top choices to help you make your decision. Examples of questions you may ask include:
- Is the office staff friendly and helpful?
- Are the office hours convenient for your schedule? Do they offer night or weekend appointments?
- Do they offer virtual appointments using the phone or video services?
- How can you reach your provider? Is there a patient portal?
- Which hospital does the provider use?
- Does the provider have experience treating people with your medical conditions?
- What’s the cancellation policy?
- How long does it usually take to get an appointment?
- Are laboratory services or other testing available in the office?
- Does the provider and office staff speak your preferred language?
Answering these questions can help you find a primary care physician you will work well with on your health journey.
Seek a Second Opinion
Even if you trust and work well with your healthcare provider, it may be necessary to seek a second opinion. A second opinion is when you see another healthcare provider to review your medical history and diagnosis to give their interpretation of your health problems or diagnosis.
You may be afraid of offending your PCP, but this is a common practice. A second opinion can help you to feel more confident about your current diagnosis and treatment plan.
You may look for a second opinion in certain situations, such as:
- Your diagnosis is unclear
- You have a rare condition
- Your condition is life-threatening
- You have one or more other medical conditions
- Your current provider doesn’t specialize in the condition you were diagnosed with
- There are many treatments to choose from
- Your treatment is experimental or risky
- Your treatment isn’t working
- You’re considering having surgery
- Your insurance requires a second opinion
- You want more information
Talking to your current healthcare provider about a second opinion may feel intimidating. But most providers know this is a normal part of the process, and they shouldn’t be offended. Some doctors may even suggest a second opinion before you ask in certain cases, such as a cancer diagnosis. You should ask your current provider for a referral for another doctor to give a second opinion.
Prepare for Your Appointment
As primary care physicians, we are here for you and we want you to be in charge of your health so a little preparation can go a long way to make sure you get the most out of your appointment with your healthcare provider. During a healthcare appointment, it’s easy to become distracted or nervous, resulting in you forgetting to mention important concerns or symptoms. There are steps you can take to prepare for your healthcare appointment.
Think About Your Medical History
Before your appointment, you should gather information about your current and past medical history. This information will help your healthcare provider get an overview of your health. Your medical history should include:
- All medications you currently take — including prescriptions, over-the-counter (OTC) medications, and supplements
- Recent visits with other healthcare providers
- Any test results — such as blood work or X-rays
- Your allergies
- Your family medical history
Your healthcare provider may also want to know about your lifestyle habits, for example:
- What foods you eat
- How often you get physical activity and what type of physical activity you participate in
- How much alcohol you drink
- If you smoke, vape, or use other tobacco products
- How much sleep you get
- How stress affects your daily life
Make a List of Concerns
To make sure all of your health concerns are addressed during your appointment, a list can be very helpful. You should prioritize your most important concerns and talk about them first.
If you’re experiencing new or unusual symptoms, it can help to write down the following:
- What the symptoms feel like
- When your symptoms first started
- When the symptoms occur and how long they last
- How often do the symptoms occur
- Any factors that make your symptoms better or worse
- How the symptoms affect your life
You may also consider discussing how your current treatments are working and any immunizations you need.
Set Yourself Up for Success
Healthcare appointments can be stressful, but you can ensure the process goes as smoothly as possible.
If you have a condition that causes fatigue (extreme tiredness), you should consider making your appointment at a time when you have the most energy. For example, if you feel weaker later in the day, you should try to make your appointment in the morning when you will feel the most energized.
It’s also important to make sure you can see and hear well for your appointment. If you have problems with your vision, make sure to bring your glasses or wear contacts to your appointment. If you have hearing problems, make sure you’re wearing your hearing aids, and they’re working well.
If your doctor doesn’t speak your preferred language, you should ask for an interpreter. While a family member may be able to translate, you may feel more comfortable speaking about sensitive topics using a professional interpreter. It may take time for your healthcare provider’s office to prepare an interpreter, so you should call ahead to ask for one.
You may also consider bringing a close friend or family member you trust with you to your appointment. They can help you remember what your healthcare provider says during your appointment.
Find Support
Even if you have a strong support system of friends and family, a health-related support group can help empower you with information about your health condition. A support group brings together people with similar experiences to learn from others’ experiences. Support groups are common for people with specific medical conditions, such as cancer.
There are different types of support groups, including:
- Peer-led groups — The group is led by other members of the group.
- Professional-led groups — The group is led by a trained professional (for example, a social worker or therapist) who guides the conversation.
- Informational support groups — The group is led by a professional facilitator who provides health-related education
You may be able to find a support group that fits your needs in the following ways:
- Asking your healthcare provider for a recommendation
- Through a nonprofit organization that advocates for your medical condition
- Through the National Institutes of Health website for your specific medical condition
