Patient Self-Advocacy

TAKEAWAYS & KEY POINTS

Patient self-advocacy has many different aspects, but at its core, it is about actively participating in decisions about your health.
Practicing self-advocacy can help you get the support and medical care you need which can lead to better health outcomes.
There are actions you can take to get the most out of your medical appointments and become a better advocate for your health:

Self-Advocacy in Healthcare

What is self-advocacy in healthcare?

Have you ever left a medical appointment and felt you didn't understand what your provider told you?
Have you ever felt that your healthcare provider didn't listen to your questions or understand you?

If so you are not alone. Patient self-advocacy is a tool to help you actively participate in decision-making regarding your treatment and healthcare, by having the confidence and willingness to ask your healthcare provider questions.¹ Patient self-advocacy is about speaking up for yourself, making your own choices about your health, educating yourself about your needs, and telling your provider how you feel and the challenges you face.

This Photo by Unknown Author is licensed under CC BY

Why is self-advocacy important?

Though some people may feel uncomfortable speaking up for themselves self-advocacy can help give you some control over your healthcare.² Research has shown that self-advocates are more likely to receive better care and get their medical problems answered.³ This can provide a sense of hopefulness and lead to better overall health.³ Lastly, it can help your healthcare provider understand you better and give you the confidence to ask for the support you need.

SPECIAL NOTE:

PATIENTS WITH LANGUAGE BARRIERS AND SENSORY IMPAIRMENTS

If you have a language barrier or a sensory impairment (e.g., deaf / hard of hearing, visually impaired, etc.), you can ask for assistance in ANY medical facility. These specific needs should be properly addressed by your care team and if you need further assistance most facilities have patient advocates on staff.

Request Language Assistance: If you don’t understand your medical information, let your healthcare team know. It is your legal right to request interpreter services or translation of health documents at any point and doing so will help you make better health decisions.⁶

Language assistance can include:

A language interpreter
American Sign Language (ASL) interpreting or Communication Access Realtime Translation Services (CART).
Documents in Braille, large-print or in a computer file.
Information in simpler words

^*For languages that are less common, most medical facilities have access to devices that provide immediate 24-hour access to remote medical translators in virtually every language.

Look below to find tips and resources on how to become a better patient self-advocate.

Patient Advocacy Tips

1. Come Prepared: You Know You Best!

Preparing before your appointment and arriving early can make you feel less stressed because you’ll know exactly what your goals for the visit are!
Write down any concerns or questions before your appointment.
Bring a list of any symptoms you have and any medications you take.
If you are seeing a specialist, it can also be helpful to bring copies of any test results they may need.

To help you prepare and get the most out of your appointment:

2. Be Open & Ask Questions:

It is important to be open with your providers so they can provide the proper care and resources you need. This will be helpful to your overall health and in building a trusting patient-provider relationship. Remember, what you share with your doctor is 100% private.
Ask for information in simpler terms if something does not make sense. If you understand better through visual learning, ask if it could be explained with a picture or drawing.
Your medical records are YOURS. Make sure you are aware of where and how to access your records and ask your provider if you aren't.

If you don’t understand something… ask your provider to explain.

Question Examples:

“Can you help me understand ____?”
“Where can I access my medical records?”
“Am I up to date on my vaccinations?”
“Are there other treatment options for me?”
“Why do I need this test/medication?”
“What age should I start getting screened for ___?”
“What other patient resources are available to me?”
“Will these tests/appointments/medications be covered by my insurance?”
“Can I have an interpreter? English is not my native language.”
For more suggestions on questions to ask, see "Questions to Ask Your Health Care Provider

Note: If you require a special service (i.e., interpreter, large print, magnifier, audio amplification, etc.) try to request it when you make the appointment, not when you arrive, if possible.

3. Ask What’s Most Important First:

The average doctor’s appointment is 15 minutes, so it’s important to stay on topic and make the most of that time.
Order your questions based on importance and get your most pressing concerns addressed first in case you run out of time.

4. Take Notes & Stay Organized:

It can be helpful to write down any important instructions and information your health care provider shares so you can recall what was said later.
If you struggle with taking notes, consider bringing a supporter along to assist you, or ask your doctor if you can record your session so you have a record of it.
Creating a list of items, you need to act on before your next appointment can help keep you on track with your care plan.
Be sure to keep all your medical notes in one place.

5. Bring a Supporter:

Having a friend or family member there to support and advocate for you can help boost your confidence during appointments.
Having a second set of ears and eyes there can also make sure no important information is missed.

6. Never Feel Like You Must Stick with One Provider:

If you believe you have been misdiagnosed, have not received adequate care, are not building a trusting relationship with your provider, or have not had your needs addressed you can change providers.
You can ask your current doctor to refer you, ask a friend, or use resources to find one on your own.

I am not getting the information I need from my provider, what other resources can help?

Your healthcare providers know your health history, so they are the best source of health information. However, if you feel you need more information, or have unanswered questions, there are other resources that can help, such as support groups, patient advocates, nurse navigators, social workers, or a peer who has experienced similar health challenges (peer mentor).

The internet can also be a great tool, however, medical information found online is not always trustworthy or credible. To learn more about how to find reliable health information online (in English and Spanish) click here.

7. Practice, Practice, Practice!

Self-advocacy can seem difficult or uncomfortable. However, the more you advocate and speak out for yourself, the more at ease you will feel doing it in the future.

Understanding Health Information/Health Literacy

Is self-advocacy the same as health literacy?

Although self-advocacy and health literacy can overlap and both are important, they are not the same. Health literacy refers to how well someone can find, understand, and use medical information to make decisions regarding their health.⁴ Examples include understanding medication instructions or explaining your medical history to your provider. Health literacy skills are important because they can help us prevent, understand, and manage health issues as they arise.⁵

How are health literacy and self-advocacy related?

Health literacy skills can equip patients with the knowledge they need to better communicate with their providers and practice self-advocacy.

Additional Resources

General:
- Center for Disease Control and Prevention (CDC)
  - Patient Engagement- Health Literacy and Patient Self-Advocacy:https://www.cdc.gov/healthliteracy/researchevaluate/patient-engage.html
- California Chronic Care Coalition (CCCC) - How to Advocate for Yourself at the Doctor’s Office
- New York State Department of Health: NYSDOH: Patient Rights in New York State.
- Understanding Health Information/Health Literacy Basics: CDC: https://www.cdc.gov/healthliteracy/basics.html
Additional Information for:

Cancer

Stony Brook Cancer Center: Request Health Education/Self Advocacy Presentations or Materials
National Coalition for Cancer Survivorship: Self-Advocacy, A Cancer Survivor’s Handbook

English as a Second Language
- National Institute of Health (NIH): Spanish Language Health Materials
- The Heart Hub: Appointment Tips for Non-English Patients
For People with Disabilities:
- Center for Medicare and Medicaid Services:Equity Initiatives-Getting the Care Your Need
- Oregon Office on Disability and Health: Taking Charge of My Health Care Toolkit (11 modules of interactive topics)
LGBTQ+:
- Suffolk County Department of Health Services: LGBTQ+ Patient Self-Advocacy

References

Center for Disease Control and Prevention [CDC] (2021). Patient Engagement. https://www.cdc.gov/healthliteracy/researchevaluate/patient-engage.html
WebMD (2021). Fight for Your Rights as a Patient. https://www.webmd.com/a-to-z-guides/health-care-21/health-care-patient-rights
Ainslie J, Hicks R, Drummond R, Blakey D, McKenzie MB. Simulated bone metastases: A case study of two patients with breast cancer. Australas Radiol. 1999;43(3):365–368.
CDC (2023). What is Health Literacy? https://www.cdc.gov/healthliteracy/learn/index.html
CDC (2022). Understanding Health Literacy. https://www.cdc.gov/healthliteracy/learn/Understanding.html
Chan. D. (2015). Justice in Aging Organization. Ten Things You Should Know About Language Access Advocacy for Older Adults. https://justiceinaging.org/ten-things-you-should-know-about-language-access-advocacy-for-older-adults/
UVA Health (2019). Overcoming the Language Barrier: How to Help a Non-English Speaker Get Optimal Healthcare. https://blog.uvahealth.com/2019/11/12/how-to-help-a-non-english-speaker-get-optimal-healthcare/
American Counseling Association (2017). Advocacy for English Language Learners and the Role of Interpreters to Assist Counselors (p.4). https://www.counseling.org/docs/default-source/vistas/advocacy-for-english-language-learners.pdf?sfvrsn=eec24a2c_6

Suffolk County Government

Edward P. Romaine, County Executive