By Matt Toresco, Founder of AdvocateBridge
You have made the decision to get help. Maybe you found an advocacy organization, or maybe you are about to hire an independent patient advocate for the first time. Either way, you might not know what happens next.
That uncertainty is normal. Most patients have never worked with an advocate before. This guide walks through what the process actually looks like — from first contact to ongoing support — so you know what to expect and can get the most out of the relationship.
First Contact: What to Have Ready
Whether you are calling an organization's helpline or scheduling a consultation with an independent advocate, you do not need to have everything figured out. But having a few basics ready will help the conversation go further:
Your diagnosis (if you have one) — even a suspected or preliminary diagnosis helps
Your most pressing concern — insurance denial? Can't find a specialist? Overwhelmed by treatment options?
Your insurance type — Medicare, Medicaid, employer plan, marketplace, uninsured
A list of your current providers — names and specialties, even if incomplete
Any recent documents — denial letters, discharge summaries, bills you do not understand
If you do not have any of this, call anyway. Advocates are trained to start wherever you are.
Working with an Advocacy Organization
When you contact a patient advocacy organization, here is what typically happens:
Initial intake
A staff member or trained volunteer will ask about your diagnosis, your needs, and your situation. This is not a medical appointment — they are figuring out which of their programs can help you. The conversation is usually 10 to 30 minutes.
Program matching
Based on your intake, they will connect you with the right program:
Education: Printed or digital materials, webinars, or one-on-one education sessions about your condition
Support groups: Regularly scheduled groups (online or in-person) where you can connect with others
Financial assistance: Applications for copay help, grants, or patient assistance programs
Navigation: A patient navigator or case manager assigned to help you through a specific process (like finding a specialist or starting treatment)
Peer mentorship: A trained mentor who has personal experience with your diagnosis
Ongoing engagement
Most organizations will check in periodically, but the depth of ongoing support varies. Larger organizations may assign you a case manager. Smaller ones may rely on you to reach back out when you need more help. Either way, you are never "using up" their services — that is what they exist for.
Working with an Independent Patient Advocate
Independent advocates provide a more personalized, intensive level of support. Here is the typical process:
1. Initial consultation (often free)
Most independent advocates offer a free 15 to 30-minute consultation. This is where you:
Describe your situation and what you need help with
Ask about their experience with your condition or issue
Understand their fees and how they work
Decide if the relationship feels right
This is a two-way evaluation. You are interviewing them as much as they are assessing your needs. A good advocate will be honest about whether they are the right fit.
2. Agreement and scope
If you decide to move forward, the advocate will typically provide:
A written agreement outlining services, fees, and confidentiality
A clear scope of what they will and will not do
An estimate of time and cost
Fees vary widely — from $75 to $250+ per hour depending on the advocate's credentials, location, and specialization. Some offer packages or flat rates for specific services like insurance appeals or hospital stays.
3. Information gathering
Your advocate will need access to relevant documents:
Medical records (you may need to sign a release)
Insurance documentation
Bills, explanation of benefits (EOBs), and denial letters
A list of your medications, providers, and upcoming appointments
4. Active advocacy
Depending on your needs, the advocate may:
Accompany you to appointments (in person or by phone)
Call your insurance company on your behalf
Write appeal letters
Research treatment options and clinical trials
Coordinate communication between your providers
Review and dispute medical bills
Help you prepare questions for upcoming visits
5. Regular updates
A good advocate keeps you informed. You should expect:
Clear communication about what they are doing and why
Regular updates on progress
No surprises on billing
Respect for your decisions — they advise, you decide
Questions to Ask Any Advocate
Whether you are working with an organization or an independent professional, these questions will help you evaluate the relationship:
What experience do you have with my specific condition or situation?
What services are included, and what is out of scope?
How do you communicate — phone, email, portal?
What are your fees? Are there sliding-scale options?
What credentials or certifications do you hold? (Look for BCPA — Board Certified Patient Advocate)
Can you provide references from past clients?
What happens if our needs go beyond your expertise?
How do you handle disagreements between me and my care team?
What Good Advocacy Feels Like
When advocacy is working, you should feel:
Less alone — Someone understands your situation and is actively helping
More informed — You understand your options better than before
More empowered — You are making decisions with support, not having decisions made for you
Less overwhelmed — The logistical burden is lighter because someone else is carrying part of it
If advocacy feels pressuring, confusing, or dismissive — that is a sign the relationship is not working. Good advocacy is ethical, transparent, and empowering.
Start With One Step
You do not have to commit to a long-term relationship to benefit from advocacy. Even a single call to an organization or a one-time consultation with an independent advocate can change your understanding of your situation and your options.
Matt Toresco is the founder of AdvocateBridge. His personal experience as a patient — 8 surgeries, 18 years fighting for answers, and a TEDx talk seen by over 1.1 million people — drives his mission to make advocacy support accessible to every patient.