A patient speaks with a doctor across a desk in an exam room while the doctor listens.

You know your body. Your voice belongs in your healthcare.

Remember: healthcare is a conversation.

Asking questions, sharing concerns and participating in decisions about your care can help you become a more active partner in your health.

You know your body, your symptoms, your history, and your lived experience. And you don’t have to do it alone.

Family, friends, community health workers, patient navigators, and community organizations can all play a role in helping people navigate healthcare, especially when managing a chronic illness.

For Black communities, this conversation also needs to be understood within the larger context of health inequities and differences in healthcare experiences.

Self-advocacy isn’t a substitute for health equity. Healthcare systems and providers have a responsibility to provide equitable, respectful, high-quality care. Knowing how to use your voice can give you another tool for participating in your own care.

Does patient self-advocacy actually improve health outcomes?

Self-advocacy overlaps with, but is not identical to, patient activation, which refers to the knowledge, skills, and confidence people have to manage their health and health care.

A 2022 systematic review and meta-analysis by Anderson and colleagues examined the relationship between patient activation and hospital or emergency-department use among adults with chronic conditions. The review included nine observational studies with 153,121 participants; six studies involving 151,359 participants were included in the meta-analysis.1

Compared with lower activation, higher patient activation was associated with:

  • 31% lower relative risk of hospitalization (RR 0.69, 95% CI 0.61–0.77)
  • 24% lower relative risk of emergency-department visits (RR 0.76, 95% CI 0.70–0.84)

These findings show an association, not proof that activation caused the reduction. The studies were observational, and results varied substantially across them. The review also focused on healthcare use, not the full range of health outcomes.

What does that mean?

This does not mean that asking your doctor more questions automatically lowers your likelihood of hospitalization.

Patient activation encompasses a person’s knowledge, skills, confidence, and ability to manage their health, not simply whether they speak up during an appointment.

The studies included in the 2022 meta-analysis were observational. They identified an association but could not establish a straightforward cause-and-effect relationship between activation and healthcare use.

Factors such as illness severity, access to high-quality care, income, housing, transportation, insurance coverage, and discrimination may influence both a person’s ability to participate in care and their likelihood of hospitalization or emergency-department use.

An earlier systematic review reached a similar conclusion. Reviewing 10 studies of people with chronic illnesses, Kinney and colleagues found that patients in the two lowest patient-activation stages were more likely to have been hospitalized, while those in the lowest stage were more likely to have used an emergency department.2

Bottom line: Greater patient activation is associated with lower hospital and emergency-department use, but the evidence does not show that patients can prevent poor outcomes simply by advocating more effectively for themselves. Supporting patient participation can be valuable, but responsibility also rests with healthcare providers, health systems, and policymakers to address the clinical, social, and structural conditions that shape health.

A smiling doctor in a white coat prepares to examine a patient during a clinic visit.

Why does patient advocacy matter?

Self-advocacy can be as simple as:

  • Telling your doctor when something has changed
  • Asking for an explanation when something doesn’t make sense
  • Asking about your treatment options
  • Asking what happens next
  • Telling your provider when a treatment isn’t working for you
  • Asking for an interpreter when you need one
  • Asking who you can contact if you have questions after the appointment
  • Bringing someone you trust to the appointment. They can help remember information and take notes.
  • Taking notes. Medical appointments can involve a lot of information.
  • Asking your provider to explain something again

The National Institute on Aging recommends making a list of concerns, prioritizing them, and bringing relevant medical information to an appointment. It also recommends considering bringing a family member or friend who can help take notes and remember what the doctor says.

Five questions to take to your next appointment

You don’t need to know everything about your diagnosis to ask good questions. Preparing questions before an appointment helps make sure your important concerns are addressed. Try these:

  1. What could be causing this?This can help you understand what your provider is considering.
  2. What are my options?There may be more than one reasonable approach.
  3. What are the benefits and risks of each option?Understanding tradeoffs can help you participate in decisions.
  4. What happens if we wait?This can help you understand whether something needs immediate attention or whether there is time to consider your options.
  5. What should I do next, and when should I follow up?Before leaving, make sure you understand the next step.

Why does this matter for Black communities?

Healthcare disparities don’t happen in a vacuum.

The Institute of Medicine’s landmark Unequal Treatment report documented racial and ethnic disparities in healthcare and concluded that minority patients could receive lower-quality care even after accounting for factors such as insurance status and income.3

Research has also examined differences in communication between Black and White patients and physicians. One study analyzed medical visits involving 458 African American and White patients and 61 physicians.4 Researchers found:

“Physicians were 23% more verbally dominant and engaged in 33% less patient-centered communication with African American patients than with White patients.”

This is not an argument that Black patients need to work harder to receive equitable care.

Instead: patients deserve to be heard, and healthcare systems have a responsibility to make that possible. Self-advocacy is one tool patients can use while we continue working toward more equitable systems. That distinction matters.

Why is this important?

The reasoning is important:

  1. Communication is a fundamental part of healthcare.
  2. Patients need opportunities to explain symptoms and concerns.
  3. Patients need to understand recommendations and treatment options.
  4. Research has identified differences in patient-physician communication by race.
  5. Communication and being heard are legitimate health-equity issues.

You don’t have to navigate chronic illness alone

For people living with chronic conditions, healthcare doesn’t happen only inside a doctor’s office.

It happens at home. It happens at work. It happens in neighborhoods. It happens around the dinner table.

It happens when someone needs a ride to an appointment, help picking up medication, someone to listen after receiving difficult news or someone to notice that something has changed.

“In general, social support from family members affects chronic illness outcomes…”

Research supports the importance of social support in chronic disease management. A systematic review examined 30 studies representing 22 participant cohorts involving adults with conditions including diabetes, cardiovascular disease, arthritis and end-stage renal disease.5

The review found that family cohesion and attentive responses to symptoms were associated with better outcomes, while critical, controlling and overprotective responses were associated with negative outcomes.

That means support isn’t necessarily about telling someone what to do.

Sometimes the most helpful thing you can do is:

  • Listen.
  • Go to an appointment.
  • Take notes.
  • Help organize questions.
  • Provide transportation.
  • Help with meals.
  • Pick up medication.
  • Check in.
  • Help someone find a community resource.
  • Respect the person’s choices.

Support doesn’t mean taking over. It means showing up.

Community is part of health

The Social Determinants of Health include the social and community conditions in which people live and interact.

For BEC, this is especially relevant because health equity isn’t only about what happens in a clinic. BEC describes its approach as using social determinants of health to help identify needed “wrap-around services” through local nonprofit organizations.

That approach recognizes something important: a healthcare recommendation isn’t always enough.

  • A provider might recommendCome back in two weeks.But what if the patient doesn’t have transportation?
  • A provider might sayTake this medication every day.But what if the medication is unaffordable?
  • A provider might recommendEat healthier foods.But what if healthy food isn’t affordable or easily accessible?

A patient might understand exactly what their doctor recommends and still face barriers to carrying it out. That’s why health advocacy and community support need to happen together.

What if your doctor doesn’t listen?

This is an important part of self-advocacy.

Sometimes a patient speaks up and still feels dismissed. If that happens, you have options.

Start by being specific

You can say:

  • I’m concerned that we’re not addressing the change I’ve noticed.
  • I’d like to understand why you don’t think this needs further evaluation.
  • What other possibilities are we considering?
  • Can you explain why you recommend this treatment?
  • What symptoms should cause me to contact you again?

These questions don’t require you to challenge your provider’s expertise. They help make the conversation clearer.

Ask for another explanation

If you don’t understand something, say so:

  • I’m not sure I understand. Can you explain that another way?

You can also ask the provider to write down important instructions or provide information you can review later.

Bring an advocate

A trusted friend or family member can help you remember what was discussed and ask questions. The National Institute on Aging specifically recommends considering bringing a family member or friend to an appointment and notes that they can help with remembering what was discussed and taking notes.

Ask to speak with someone else

If the problem isn’t resolved, ask whether the healthcare organization has a patient relations, guest relations or patient advocacy department.

If your doctor doesn’t listen

  1. Start by being specific
  2. Ask for another explanation
  3. Bring an advocate
  4. Ask to speak with someone else
  5. If you believe a healthcare facility violated your rights or provided unsafe care

If you believe a healthcare facility violated your rights or provided unsafe care

Pennsylvania’s Department of Health allows patients or others to file complaints about healthcare facilities. The Department says:

“If you have a problem with a health care facility, the first step is to talk about your concern with the facility.”

If that doesn’t resolve the issue, a complaint can be filed with the Pennsylvania Department of Health. Complaints can involve concerns including substandard care, patient-rights violations, neglect, abuse or unsafe conditions.

Important

This resource is for complaints about healthcare facilities. It isn’t a substitute for emergency medical care or legal advice.

Healthcare facility complaint line: 1-800-254-5164 · File a complaint online

Allegheny County resources

If you or someone you love is trying to navigate healthcare, you don’t have to figure out every resource on your own.

Where to start

  • 211: connect with local resources

    If you don’t know where to start, call 211. United Way 211 connects people with local health and human-service resources, including healthcare, transportation, food, housing, and caregiver support. It is a confidential referral and information service, and its local specialists can help people identify available resources.

    Call: 211

    Online: United Way 211 (211.org)

  • Allegheny County Health Department: Chronic Disease Prevention

    Education and resources related to chronic conditions including heart disease, high blood pressure, diabetes and cancer. The county also maintains a Health and Wellness Resource Guide for residents who are uninsured or underinsured.

    Start here: Allegheny County Chronic Disease Prevention

Community health centers

Community health centers can be particularly valuable for people who are uninsured, underinsured or looking for care that connects medical needs with other community supports. Examples in the Pittsburgh/Allegheny County area include:

Because services, eligibility, hours, and insurance policies can change, call before visiting and ask what services are currently available. See the full list of community health centers.

Free and low-cost care

  • Birmingham Free Clinic

    Provides care for medically uninsured people in Allegheny County.

    Phone: (412) 246-3053

    Website: birminghamfreeclinic.wixsite.com

  • Allegheny County no-fee and low-cost resource guide

    A resource guide for uninsured and underinsured residents. For other free or low-cost services, 211 can help identify current options.

    Open the guide (PDF)

If you have a problem with a healthcare facility

  • Pennsylvania Department of Health: healthcare facility complaints

    The Department regulates and licenses hospitals and other healthcare facilities. If you have a concern, first raise it with the facility. If it isn’t resolved, you can file a complaint with the Department.

    Complaint line: 1-800-254-5164

    File a healthcare facility complaint

A simple checklist for your next doctor’s visit

Before your appointment

  • Write down your most important questions.
  • Make a list of symptoms or changes you’ve noticed.
  • Bring a list of medications, vitamins and supplements.
  • Bring relevant medical records if needed.
  • Write down your doctor’s name and contact information.
  • Ask someone you trust to come with you if you’d like support.

During the appointment

  • Tell your provider what has changed.
  • Ask questions.
  • Ask about your options.
  • Ask about benefits and risks.
  • Ask what happens next.
  • Take notes.
  • Ask for clarification if you don’t understand something.

Before you leave

  • Make sure you know the next step.
  • Know when you’re supposed to follow up.
  • Know what symptoms or changes should prompt you to call.
  • Know who to contact if you have questions.

Use the interactive checklist on your phone · Download the printable checklist (PDF)

Your voice matters, but health equity is a shared responsibility.

Patient advocacy can help people become more active participants in their healthcare. Community support can help people navigate the challenges that happen outside the doctor’s office. And healthcare systems and providers have a responsibility to listen, communicate clearly and provide equitable care.

You know your body. Your experience matters. Your questions matter. Your voice belongs in your healthcare.

And you don’t have to use that voice alone. Share this resource with someone you love.

Find medical care, clinics and more in Allegheny County

Browse community health centers, free and low-cost clinics, and other local resources on our Resources page.

Explore Allegheny County resources

Notes and research citations

  1. Anderson G, Rega ML, Casasanta D, Graffigna G, Damiani G, Barello S. The association between patient activation and healthcare resources utilization: a systematic review and meta-analysis. Public Health. 2022;210:134–141. doi:10.1016/j.puhe.2022.06.021 ↩
  2. Kinney RL, Lemon SC, Person SD, Pagoto SL, Saczynski JS. The association between patient activation and medication adherence, hospitalization, and emergency room utilization in patients with chronic illnesses: a systematic review. Patient Education and Counseling. 2015;98(5):545–552. PubMed 25744281 ↩
  3. Smedley BD, Stith AY, Nelson AR, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Institute of Medicine. Washington, DC: The National Academies Press; 2003. nap.nationalacademies.org ↩
  4. Johnson RL, Roter D, Powe NR, Cooper LA. Patient race/ethnicity and quality of patient–physician communication during medical visits. American Journal of Public Health. 2004;94(12):2084–2090. doi:10.2105/AJPH.94.12.2084 ↩
  5. Rosland AM, Heisler M, Piette JD. The impact of family behaviors and communication patterns on chronic illness outcomes: a systematic review. Journal of Behavioral Medicine. 2012;35(2):221–239. doi:10.1007/s10865-011-9354-4 ↩