ADVOCACY HUB

You have to start with advocating for yourself because it's foundational for your credibility, clarity, and experience when helping others. When you learn to put a voice to your needs, learn to ask the right questions, and confirm that you understand what you're hearing about your own medical condition and treatment options, then you start building the basic skills that help you support yourself first and then others without being perceived as someone who is "taking over" for others. Ethical advocacy respects and supports others and their choices and freedom to make educated decisions.¹ ¹²

Self-advocacy also protects the community, as a whole, in which you live. If you can learn "how" to advocate with respect and accuracy, you can reduce spreading misinformation, reduce or remove conflicts, and prevent avoidable barriers for others in our community, such as our DBS Online Zoom meetings. Advocating for others should work to emphasize in our community, or group, that we aren't alone. It supports open communication that is empathetic and important, and helps people realize that having healthy conversations isn't a battle.³ ⁵ It's truly about caring for each other!

Your Voice Matters!

You have a core human right called "informed consent."

This means that you have the right to receive information in a way that you can understand. An understand what your medical team is proposing as a plan of care for you, along with the knowledge of any potential benefits and risks. Lastly, everything your medical team proposes should include alternatives to your plan of care. This "informed consent" is so you can make the best decision for what you feel is right for you: freely, informed and without any pressure.¹³ ¹⁴ ¹⁵

This includes your right to say no. The right to ask for more time, or even a second opinion, even if there may be factors specific to your circumstances and urgency in needing to be treated medically.¹⁵ Most doctors will agree that second opinions are valid and warranted, as this this is a great decision you have to consider, especially if the medical plan of care is more intensive and could hold greater negative consequences.

At the core of this "informed consent" is clarity. You don't need a conversation with fancy words, but you have the right to receive honesty from your medical team when they explain all symptoms, potential concerns, priorities and urgency of your care. This is because, as the patient, can will be able to realistically expect what they is proposing for your plan of care.

This "shared decision making," of you and your medical team, allows you to make the best informed decision that will improve your health outcomes. When you combine your medical team's experience, your test results with your own personal goals and values, then you are the best advocate your can be for yourself.⁶ ⁷

Your Decision Matters!

When you are meeting with our medical team, there are some simple, structured tools that can help you keep the conversation focused.

The "Ask Me 3" is a technique where you are specific with your medical team about your concerns and your situation:

1. What is the main problem I am dealing with?
   

2. What can I do, or what do I need to do?
   

3. Why is it important for me to do this?²⁰
   

These three questions can apply to really any decision-making process or any situation that we need to address, but let's look specifically at Essential Tremors being potentially treated with Deep Brain Stimulation:

1. I know I have essential tremors. What can I expect long-term with this in my life?
   

2. What are some things that I can do to help me with eating?
   

3. You are saying that all the medications haven't worked in the past and you are recommending that I do the testing to see if I am a candidate for DBS. Why would this work for me when medication hasn't in the past?

See how you can take the "Ask Me 3" approach and modify it to any specific medical condition and treatment option? Personalizing it will help you feel like you are in ownership of your plan of care.

Another approach is "teach-back," where you repeat back the plan of care in your own words and invite your medical team to provide correction.¹⁹

Sometimes you may feel rushed when you're meeting with your medical team. This is where you use this "Ask Me 3" tool to help reduce any misunderstanding for both you and your medical team, where teamwork is the best for you moving forward.

Your Questions Matters!

"Shared decision making" is a process where you and your medical team work together to make decisions about your care, as we mentione previously. But at a deeper level it can be the collection of evidence through your test results, evaluation of your risks and benefits, and finally, your goals and preferences.⁶ ⁷ ²¹

Using this shared decision practice in your everyday care, it can be one of the most helpful things in your life.²¹ Also, the more you practice it . . . the more it becomes a habit.

You can also use "shared decision making" by asking your medical team for multiple options, not just one recommendation. When you do this, it shows your medical team that you are truly involved in your plan of care. A great question, specifically in response to your medical team's recommendation could be,

When you ask this, or similar questions, then be sure to have an actual option different than what they provide. This is where your personal research comes into play. Never go into any meeting with your medical team without some form of baseline understanding of what you are dealing wtih.

When using this process, you can then ask for tradeoffs in plain language. This can look like asking how each option could help, what the potential risks are, and what "doing nothing right now" could look like. This helps keep your conversation with your medical team grounded and prevents you from feeling pushed into a decision when you don't understand or feel like you are being heard.⁶ ⁷ Being a part of the decision-making process, along with your medical team, is exactly what being a self-advocate is all about!

Your Voice Matters!

Self-education works best when you use trustworthy sources and a simplified system. Health literacy includes the ability to access, understand, and use good health information that grows over time through practice, realizing that you may not find all of the information.⁴ ⁸ A practical approach is to use AI to create a short list of sources, take notes in your own words, and bring questions to your medical team for confirmation. Never only rely on AI to provide quality source material.

In today's world we have multiple AI sources, each providing a specific expertise. It should never be your "go to" practice to rely on one AI source because they are all trained to specifically do what they are trained to do. Without double checking the sources that one AI tool will provide with other more scientifically focused AI tools, you will get incorrect information. It's recommended to never take an AI source at face value . . . as truth, the only truth, and nothing but the truth!

Now, self-educating yourself is where community becomes a great source! Education's not only personal, it's shared. You can learn from peer support while still checking medical claims with clinicians and evidence-based sources. When we hear others' experiences, we are able to compare and contrast what we are experiencing compared to what others have dealt with and what worked for them. This is a great source for visiting with your medical team when you can say,

Also, many patient safety organizations, like the International Essential Tremors Foundation, will agree that participating in a group setting conversation that includes learning from someone else's success is beneficial.³ ⁵ At The NeuroSpark Foundation, our education resources and DBS Online Zoom Group are designed to support that kind of steady learning and question-building.

Side note: We only used Essential Tremors as one example, but you can substitute the condition with yours and use this information pathway to help you!

Also, Your Choice Matters!

First, the problem is communication, not you because we hear many saying they feel unsure if their medical team is addressing their main concern and find themselves wondering it they can revisit the goal of their meetinng with their medical team.

If you ever find yourself in this position, try using the following structure:

1. Ask for options

2. Ask for reasons, and

3. Ask for the next steps in writing.

With the concept of shared decision making (SDM) that we previously mentioned, these questions used in SDM help you emphasize and keep the dialogue, on your path of need, about what matters most to you, in a respectful way to return the conversation to why you are meeting with your team.⁶ ⁷

I think at this point it important to emphasize that if you don't feel heard, redirect or research your care to another medical team. Basically, if you don't feel that the current medial team is not hearing you, and is listening to respond . . . YOU CAN FIND ANOTHER MEDICAL TEAM AND/OR PROVIDER! That is one of the greates thing you can do to be your best self-advocate! Now, how you switch medical teams is just at important because you never want to burn down bridges to go back to that team if warranted.

The old saying about "you get more flies with sugar than vinegar," directly applies. You don't want to get a bad reputation because often medical teams in the same geographic area talk with each other . . . meaning they give each other a heads up on a difficult patient. Moving medical teams should never be considered a feeling of retaliation. It's about the quality of your care. Patient safety programs focus on encouraging patients and families to speak up, ask questions, and be persistent when they don't conversations, and don't feel that their goals and care are being heard and understood.⁵

Just remember this: How you part ways with your medical team is as important as why you have parted with them. Being respectful, while advocating for yourself, retains potentially crossing back over bridges when necessary.

Your Voice Matters!

Boundaries are super important, and how we protect yourself with clarity and dignity should be a primary focus. A boundary can be as simple as, “I'm not ready to decide today,” or “Please don't speak to my care partner about what we have talked about today. I'll do that when I know the time is ready.”

Consent and autonomy principles support the idea that we control what happens to our bodies and how decisions are made, within emergency limits.¹³ ¹⁴ ¹⁵ In some cases that is where HIPPA keeps your medical providers from doing this, especially when you are doing your admin paperwork when it asks you for someone you would like to be approved for medical decisions, obtaining your medical records and have discussions on your care. That is your right, but I can say having a care partner or family supports can be the greatest thing you can experience. Often they hear truths when you may be trying to process information that is higher level of impact.

Boundaries can also include accuracy. What does that even mean? Well, when we are able to avoid exaggeration, avoid potential health threats, and avoid assumptions about the intent of hearing what your medical team is sharing, then you can focus on the facts, your lived experiences, and the next steps in your medical care. This keeps your self-advocacy as effective and helps to protect your relationship with your medical team, which is consistent with your interdependence and partnership desires.¹⁰ ¹¹

How you advocate is as important as why you advocate, because your approach can either open doors or close them (sometimes quietly, but often abruptly) for those patients who visit our medical team in the future. How we advocate has a ripple effect that can create problems for the medical team as they move forward as well. Ultimately they should be trained how to disconnect emotions from how they are allowed to help one patient to the next, but when a consultative practice is soured by one, or many, previous bad experiences, it can erode the empathy that was once present with your medica team. Try to remember that your current medical team may treat you the way they do because of a "bad actor" patient well before they meet with you. Your medical team is human as well along with the emotions that brings. With that said, protecting your care is your primary concern, and how you handle difficult conversations, or the lack thereof, speaks volumes for your future care and their ability to provide good medical care as well.

This also connects back to the difference described earlier: Advocacy is Purposeful. Advocacy is Respectful. Advocacy is Accurate, and Partnership-Oriented. It's not aggressive, meant to create humiliation, or lives in misinformation.³ ⁵ ¹⁰ ¹¹ Here is a practical sequence for you to consider using that can build step-by-step:

1. Name your goal in one sentence, and in plain language.

2. Write down your top three concerns and one “must-protect” area, like sleep, mood, mobility, speech, work, parenting, or safety.

3. Bring a short timeline of your symptoms and and any past medical treatments or surgeries, even if it's less than imperfect.

4. Use “Ask Me 3” that we mentioned earlier to help keep your visit, and the confersation focused.²⁰

5. Ask your medical team for options, not just a single solution, and ask about what your tradeoffs may be, again in plain language.⁶ ⁷ Don't be embarrased to ask your medical team to use less "medicalese" and more "layman's language."

6. Use the teach-back method to confirm that you understand what is being shared with you, and invite correction.¹⁹ It is your right to understand, and at the level you can understand.

7. You have the right to request any next steps in your plan of care in writing. This can include who is your best contact on one or more topics, when should you call, and what symptoms could you experience that would be the reason you need to reach out to someone.³ ⁵

8. Ask where you can access and find medical notes and test results so you can have continuity of care in the event you move geographically and have to find a new team, or in the event you seek a second opinon.⁹ ¹⁶ ¹⁷ ¹⁸

9. As your meeting with your medical team is coming to an end, engage in a debriefing that includes: a. What you understood. b. What you may be missing, and c. What you and your medical team can address at any future followup visits.

Using trusted education resources, including the NeuroSpark Foundation's website, you will be able to build stronger and more specific questions before any next step in your plan of care, or follow up medical team visits.⁴ ⁸

As always if you find that your symptoms become urgent or severe befor you follow up visit with your medical teams seek emergency care right away.

And remember . . . Your Voice Matters!

Before you can advocate for others, you need to get their "buy-in" so to speak. You can't speak on the behalf of others, or share medical information to them without, first, their desire to be helped, and in place of their consultation with their own medical team. Sometimes the best advocacy you can do with others it to help them find the right medical team for their specific needs. This can only be done with their consent and understanding that you are helping them, not taking over their path of care. That's just not our job.

When advocating for others, this means that you are supporting their voice, not replacing it. You are helping them become their own self-advocate just as you had to learn how to do it for yourself. Ethically advocacy for others is about "autonomy," meaning that person’s preferences and choices matter, even when you may choose a different path for yourself.¹ ¹² If we can't state the other person’s goals in their own words and with their approval, then you're not ready to help advocate with, or for, them.

The primary standard is about permission and consent. You can ask what they want shared, what they want asked, and what role they want you to play. You have to practice and emphasize partnership and engagement, which is fully respecting the other person’s role in their own care and safety.³

Your Voice Matters, But So Does Others!

First you have to come to the understanding, that your help may not be wanted, expected, or anticipated. Also remember that some of the best advocacy you can do for others is to provide them the sources for education, just as you may have done, to help them gain a sense of self-empowerment. You can direct them to the NeuroSpark Foundation website to start. You can offer a grounded form support, by helping them prepare questions, sharing how you take notes, how they can focus on the next steps of their care, and finally confirm that they understand what tools like "Teach-Back" we addressed earlier.¹⁹ You can also help. or share with them, how you access your medical records, visit notes, and test results in order to help them stay organized. As you may have learned, this improves continuity (continutiy of care) when they may be visiting with multiple clinicians or medical sites.⁹ ¹⁶

Lastly and more importantly, you should ALWAYS watch your tone and timing. If we are thought to be “taking over,” for another patient, their medical team may focus more on our conversations, rather than the conversation with the patient, which can make the patient you are helping to advocate for .. . . . invisible. It's always about empowering others, not taking over because we may see, and feel, that they aren't doing the best job for themselves. Empowering others to be their own best self-advocate is the goal, not the exception. We cannot be their complete medical liason, advocate or stand-in, because they can't, unless they are a family member that is unable to actually speak for themselves at medical visits. That's where you take the time well beforehand with the one you are advocating for, so that you can best represent their goals, needs, desires and participation in their plan of care along with their medical team.

The best support often looks like this:

1. You make space, 2. You help clarify, and 3. You help the person be heard.

Your Voice Matters, But So Does Others!

Firstly, we need to compart with Community Settings are versus what individual advocating for others looks like.

Community-level advocacy focus on systems and systems change, and not individual concerns. The World Health Organization shares that engaging with patients and their care partners is a key part of improving safety and reducing anyy avoidable harm.³ ²² This can include sharing general lessons that you have learned, encouraging safety practices you have experienced like asking specific questions, and developing a healthy partnership with medical teams and clinics to help improve communication.

Community advocacy becomes stronger when it's specific and constructive. Identifing barriers, proposes practical fixes, and seeking out collaboration is a best practice and approach the helps you align with what patient safety, and goals that prioritize patient learning and increases the chance of patient health improvements.²²

Your Voice Matters, But So Does Others!

No one wants, or likes, pitfalls. Some pitfalls can include sharing other's private medical, or life details without thier consent, spreading gossip, slandering medical professionals behind their backs, and presenting a single story as the only truth.¹ ² ³ This can lead to so many problems like you being black-balled from whole medical hospital systems, medical groups and teams, and other patients as well! Don't do things that would burn bridges or potential create legal problems for you . . . and your care partners!

Another pitfall is pushing someone to advocate for themselves before they are ready, which can erode trust and autonomy. You have to be patient when someone else is not where you may be in your medical path. Advocacy is about support, not taking over, and not replacing someone elses voice with yours. Support . . . not replace! Empower others . . . not steal their voice or story!

Reducing and removing harm is about separating your story from "universal claims" (meaning one truth applies to every situation), and verifing medical information with credible and double/triple checked sources, all while encouraging others to consult with their medical teams for best practice, plan of care decisions that is the best fit for them medically. Helping guide others on how to communicate with their medical teams is what true advocacy partnership looks like and helps to create tru trust-building behaviors.³

You Have a Voice . . . And So Do Others!

The first, and greatest recommendation is . . . don't do for others if you haven't done for yourself first!

You can't help without learned experience. It negates validity, and when others find out you are "doing without having done" it can lead to a negative reputation for you. You can be considered as having an ego. Someone who hasn't fixed their own house, but finds ego stroke in helping others . . . "greater than others could ever help themselves." I've experienced this with others, and it's a huge turnoff and removed validity in EVERYTHING they say. So . . . don't be that person. Don't be that type of advocate. Instead, help make other's their own best self-advocate! Nurture others based on your personal experiences. You can't teach what you don't know, right? Now in specific healthcare situations that can affect a persons work/life balance these concerns can often center on a person's accessibility options, wrapped in their own personal dignity and inclusion. Some international organizations, which including The UN Convention on the Rights of Persons with Disabilities, highlight autonomy, accessibility, and full participation in society.¹

From a practical standpoint, as a self-advocate, a person can request accommodations in writing, ask for clear processes, and document what helps performance and safety. Most medical teams have a social worker that is proficient and specializes in your specific health concerns. Request to meet with them about accomodation issues. That's their job and part of any good interdisciplinary medical team!

You can also encourage medical teams to use plain layman's language, encourage flexible ways to communicate like telehealth if possible, and respectful patience centered health planning, which benefits many people, not only those with a specific type of diagnosis.

Remember that Your Voice Matters, and So Do Others . . . including Medical Teams!

Policy advocacy often grows from patterns over time, and not just one moment. When many people report that they are experiencing the same problems then political and policy making leaders can justify discussing legislative changes, line-item budget funding, department specific research and training, or even updating current medical practices and procedures.

The World Heal Organization states that patient, and family support and engagement is super important on multiple levels, including health systems change along with governmental and legisltative action.³ ²²

If you choose to engage at this level, you should stay careful and accurate because the focus is to protect other's privacy, sharing collective themes on care when possible, and propose realistic improvements. This is where respectful urgency matters. We can be persistent without being hostile, and specific without being personal.

Here are the top three rules for advocacy at the legislative level:

1. Never say you know the answer to a question if you don't. Always say you don't know but will find and answer and provide that answer. Be sure to ask for the contact information of who you need to share that found information with.
   

2. Always bring possible changes even if you may know they are not doable. If you come to the table with potential solutions, you are taken with more seriousness than being perceived as someone who is just making noise. This also shows legislators that you want to work with them, not just have them do it!
   

3. Lobbying is NOT advocacy! Lobbying is telling someone how to vote on a cause. Advocating is asking them to consider voiting on a bill becaus it effects this amount of people in a negative way, and here are some options to considers. Asking versus telling is "sugar for the flies" in getting legislator buyin!

Remember that tone of voice, delivery of message, and collaborative work with those that can actually create system's change are change agents for you as an advocat for others!

One last consideration is that with true systems change, you can hope for change to happen in a single yearly legislative session, but also acknowledge that since Rome wasn't built in a day, it can often take multiple years to get legislators to "buy in." In a previous advocacy life for disabilty rights for children it took many newspaper letters to the editors, and a large group activity of emails, phone calls and letters to legislators state-wide, for legislators to actually using our advocacy buzz words in their comments, without prompting from use as an advocacy group. It can work, and in numbers works best!

And Remember: Your Voice Matters . . . So Does Others!

Advocacy for others works best when it builds from self-advocacy skills and keeps autonomy at the center.¹ ¹² Here are some recommended step-by-step things to help:

1. Always ask permission, and clarify the role others want you to play.

2. Learn their goals, in their words, and write them down.

3. Help them prepare questions along with a short, organized summary.²⁰

4. Support them having clear and easy to understand conversations during their visits, then use the "Teach-Back" structure to confirm their plan.¹⁹

5. Help them with follow-up logistics, records requests, and next-step tracking, without controlling choices.⁹ ¹⁶ ¹⁷ ¹⁸

6. If they want broader advocacy, help them write down their personal experience into a respectful system-level message, (Often called an Elevator Speech where they have a limited amount of time to tell their story, and hopeful outcomes), how they can protect their own privacy and accurate medical details, and helping them to find organizations they can partner with for their own personal medical change as well as systems-change if they so desire.³ ²²

Last time . . . Your Voice Matters, and So Do Others!

1. United Nations Human Rights Office of the High Commissioner. Convention on the Rights of Persons with Disabilities. Accessed December 31, 2025. https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities
   

2. Council of Europe. Convention on Human Rights and Biomedicine (Oviedo Convention): Essential elements, privacy and confidentiality. Accessed December 31, 2025. https://www.coe.int/en/web/human-rights-and-biomedicine/essential-elements
   

3. World Health Organization. Engaging patients for patient safety: advocacy brief. Published December 12, 2023. Accessed December 31, 2025. https://www.who.int/publications/i/item/9789240081987
   

4. World Health Organization. Health literacy. Published December 22, 2025. Accessed December 31, 2025. https://www.who.int/news-room/fact-sheets/detail/health-literacy
   

5. The Joint Commission. Speak Up program. Accessed December 31, 2025. https://www.jointcommission.org/en-us/knowledge-library/for-patients/speak-ups
   

6. Agency for Healthcare Research and Quality. The SHARE Approach: Steps of shared decision making, expanded reference guide. Accessed December 31, 2025. https://medschool.cuanschutz.edu/docs/librariesprovider294/default-document-library/SHARE2_final.pdf
   

7. NICE. Shared decision making (NG197). Published June 17, 2021. Accessed December 31, 2025. https://www.nice.org.uk/guidance/ng197
   

8. CDC. What is health literacy? Updated October 16, 2024. Accessed December 31, 2025. https://www.cdc.gov/health-literacy/php/about/index.html
   

9. US Department of Health and Human Services. Individuals’ right under HIPAA to access their health information. Updated May 30, 2025. Accessed December 31, 2025. https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/access/index.html
   

10. Condeluci A. Interdependence. Accessed December 31, 2025. https://www.alcondeluci.com/interdependence
    

11. Condeluci A. Interdependence, inclusion and self-determination (PDF). Accessed December 31, 2025. https://biacolorado.org/wp-content/uploads/2025/01/InterdependenceInclusion.pdf
    

12. American Medical Association. Informed consent. Accessed December 31, 2025. https://code-medical-ethics.ama-assn.org/ethics-opinions/informed-consent
    

13. StatPearls Publishing. Informed Consent. NCBI Bookshelf. Updated 2024. Accessed December 31, 2025. https://www.ncbi.nlm.nih.gov/books/NBK430827/
    

14. Canadian Medical Protective Association. Consent: A guide for Canadian physicians. Accessed December 31, 2025. https://www.cmpa-acpm.ca/en/advice-publications/handbooks/consent-a-guide-for-canadian-physicians
    

15. Council of Europe. Convention on Human Rights and Biomedicine: Article 5, general rule on consent. Accessed December 31, 2025. https://hrlibrary.umn.edu/euro/z37.html
    

16. Information and Privacy Commissioner of Ontario. Accessing or correcting your personal health information. Accessed December 31, 2025. https://www.ipc.on.ca/en/health-individuals/accessing-or-correcting-your-personal-health-information
    

17. UK Parliament House of Commons Library. Patient health records: Access, sharing and confidentiality. Published July 28, 2025. Accessed December 31, 2025. https://commonslibrary.parliament.uk/research-briefings/sn07103/
    

18. NHS Digital. How to make a subject access request. Updated February 12, 2025. Accessed December 31, 2025. https://digital.nhs.uk/about-nhs-digital/corporate-information-and-documents/publication-scheme/how-to-make-a-subject-access-request
    

19. Agency for Healthcare Research and Quality. The SHARE Approach: Using the teach-back technique (guide). Published October 9, 2024. Accessed December 31, 2025. https://www.ahrq.gov/sites/default/files/wysiwyg/sdm/share-approach/share-teachback-guide.pdf
    

20. Institute for Healthcare Improvement. Ask Me 3: Good questions for your good health. Accessed December 31, 2025. https://www.ihi.org/library/tools/ask-me-3-good-questions-your-good-health
    

21. NHS England. Shared decision making. Accessed December 31, 2025. https://www.england.nhs.uk/personalisedcare/shared-decision-making/
    

22. World Health Organization. Global Patient Safety Action Plan 2021–2030. Published August 3, 2021. Accessed December 31, 2025. https://www.who.int/teams/integrated-health-services/patient-safety/policy/global-patient-safety-action-plan