What Are Healthcare Advocates?

Introduction

If you are managing appointments, test results, new diagnoses, and insurance questions, the healthcare system can feel overwhelming. A healthcare advocate is a person who helps you navigate all of this with clarity and confidence. Advocates work alongside you and your family to explain choices, prepare for visits, coordinate next steps, and make sure your concerns are heard.

This guide explains what healthcare advocates are, how they help, when to consider one, and how to choose and work with an advocate while protecting your privacy and rights.

Who healthcare advocates are

Healthcare advocates include several helpful roles that often overlap

• Patient navigators guide people through screening, diagnosis, treatment, and follow up, especially when barriers make care hard to access.
• Nurse navigators are registered nurses who provide clinical education, triage concerns, and coordinate care plans.
• Community health workers are trusted community members who connect people to medical and social supports, address transportation and housing needs, and help with follow up on care plans.
• Patient representatives or patient experience teams at hospitals and clinics help with questions, concerns, and problem solving inside that organization.
• Long term care ombudsmen advocate for residents in nursing homes and assisted living, help resolve complaints, and protect residents’ rights.

What healthcare advocates do

Advocates focus on practical help that reduces stress and improves safety

• Prepare you for appointments by organizing questions and key information you want to cover
• Help you understand test results, diagnoses, and care options so you can make informed choices
• Coordinate communication among primary care, specialists, therapists, and your support network
• Arrange transportation, gather records, and track referrals and follow up tasks
• Help with insurance questions, prior authorization, and financial assistance programs
• Connect you with community resources for food, housing, mobility, and social support
• Support shared decision making so your values guide the plan of care

Why advocates matter

Research and national programs show that navigation and patient engagement can improve access to timely care, reduce barriers, and support better outcomes. Programs that pair navigation with community support help people follow through on screening and treatment and can reduce gaps in care for underserved communities. Hospitals and clinics also invest in patient experience teams and representatives because partnering with patients and families improves safety and quality.

How advocates fit into Medicare support

Beginning in 2024, Medicare added new services that recognize and support care navigation and help with health related social needs. These services can help people with serious or complex conditions stay on track with care plans and address obstacles such as transportation or medication access. To learn if these services fit your needs and how to get started, contact Understood Care at  (646) 904-4027  or sign up at https://app.understoodcare.com/

When to consider a healthcare advocate

You may benefit from an advocate if you

• Have a new diagnosis, a hospital discharge, or a complex treatment plan
• See multiple clinicians and want help keeping everyone aligned
• Feel unsure about next steps or want a second opinion
• Need help with insurance denials, billing questions, or financial aid applications
• Face barriers like transportation, language, housing, or caregiving strain
• Live in a nursing home or assisted living and want help with concerns or complaints

How to choose an advocate

Understood Care will pair you with an advocate who is a strong match for your individual needs.

• Experience with your health needs or care setting
• Clear explanation of services, availability, and how they coordinate with your clinicians
• Respect for your preferences, culture, and communication style
• Strong privacy practices, including clear steps for consent and information sharing
• Positive references or a connection to a trusted health system, community program, or long term care ombudsman office

If you are receiving care at a hospital or clinic, you can reach out to us at (646) 904-4027 or sign up to meet with an advocate at https://app.understoodcare.com/. If you or a loved one needs long term care, contact us and we will help you explore options and get the care you need.

Privacy, consent, and your rights

You stay in charge of your health information. Understood Care assigns an advocate based on your individual unique needs. You can name your Understood Care advocate to speak with your clinicians and health plan. For medical visits and records, federal privacy rules allow you to give written permission so your information can be shared with your advocate. If you want help with Medicare claims or appeals, an Understood Care advocate can be formally appointed to act on your behalf, and we handle the paperwork and communication for you.

Key steps

• Tell your clinicians in writing who may be present during visits and who can receive updates
• Complete any authorization forms the clinic or hospital requires
• Keep copies of signed forms for your records
• For Medicare claims or appeals, complete the Appointment of Representative form if you want someone to act on your behalf

Your designated Understood Care advocate can help with all of this.

How to work well with an advocate

• Bring a short list of your top questions to each visit
• Share a current medication list and any allergies
• Ask your advocate to summarize next steps after each appointment
• Decide together how and when you want updates, such as by phone or video call
• Review what information you want shared and what should stay private

Free tools can help you prepare questions for your visits and make the most of your time with your clinician.
Here is a concrete example you can usehttps://www.ahrq.gov/sites/default/files/wysiwyg/patients-consumers/patient-involvement/ask-your-doctor/tips-and-tools/questionscard.pdf

Your Understood Care advocate can help you use these tools and tailor the questions to your needs.‍

Healthcare Advocates: Frequently Asked Questions

• What is a healthcare advocate?
  A healthcare advocate is a person who helps you navigate the medical system so you feel informed, prepared, and supported. Advocates can be professionals, community health workers, or people based in clinics and hospitals who work alongside you and your family to explain options, prepare for visits, coordinate next steps, and make sure your concerns are heard.
• What kinds of healthcare advocates and support roles exist?
  Several roles provide advocacy and navigation. Patient navigators guide you through screening, diagnosis, treatment, and follow up, especially when you face barriers to care. Nurse navigators are registered nurses who offer clinical education, help you triage symptoms, and coordinate care plans. Community health workers are trusted community members who link you to medical and social resources such as transportation, housing, and food support. Patient representatives or patient experience teams in hospitals and clinics help address questions, complaints, and communication problems within that organization. Long term care ombudsmen advocate for residents in nursing homes and assisted living, help resolve concerns, and protect residents’ rights.
• What do healthcare advocates actually do day to day?
  Advocates focus on practical help that reduces stress and improves safety. They prepare you for appointments by organizing your questions and key information. They help you understand test results, new diagnoses, and treatment choices so you can make informed decisions. They coordinate communication among your primary care clinician, specialists, therapists, and family. They arrange transportation, gather records, track referrals, and follow up on tasks so steps do not fall through the cracks. Many also help with insurance questions, prior authorizations, and financial assistance programs, and connect you with community resources for food, housing, mobility, and social support.
• Why do healthcare advocates matter for my health?
  Research and national programs show that navigation and patient engagement can improve access to timely care, reduce barriers, and support better outcomes. Programs that combine navigation with community support help people complete recommended screening and treatment and can reduce gaps in care for underserved communities. Hospitals and clinics invest in patient experience and advocacy roles because partnering with patients and families improves safety, communication, and overall quality of care.
• How do advocates fit into Medicare support and new services?
  Beginning in 2024, Medicare added new services that recognize care navigation and support for health related social needs. These services are designed to help people with serious or complex conditions stay on track with care plans and address obstacles such as transportation, food, home safety, or medication access. If you want to know whether these services could apply to you, an Understood Care advocate can help you review your situation and discuss options.
• When should I consider working with a healthcare advocate?
  You may benefit from an advocate if you have a new diagnosis, are recovering after a hospital stay, or are facing a complex treatment plan. It is also helpful if you see several clinicians and want help keeping everyone aligned, if you feel unsure about next steps or are considering a second opinion, or if you are dealing with insurance denials, billing issues, or financial aid applications. Advocates are especially valuable when you face barriers related to transportation, housing, language, caregiving responsibilities, or distance from specialty care, and for people living in nursing homes or assisted living who need help addressing concerns or complaints.
• How do I choose the right advocate or advocacy service?
  A good advocate or service should have experience with your health needs or care setting, such as chronic disease management, hospital transitions, or long term care. They should clearly explain what they do, when they are available, and how they coordinate with your clinicians. Look for respect for your preferences, culture, and communication style and for strong privacy practices with clear steps for consent and sharing information. Many people feel more comfortable when an advocate is connected to a trusted health system, community organization, or long term care ombudsman program. Understood Care will pair you with an advocate who is a strong match for your individual needs.
• What is my role and what stays under my control if I have an advocate?
  You stay in charge of your health information and decisions. You choose who is part of your care team and what they are allowed to know. Your advocate’s job is to support you, not to replace your voice. You can ask an advocate to listen quietly, to ask a few agreed upon questions, or to speak more actively for you in certain situations. You can change or withdraw permission at any time.
• How do privacy, consent, and my rights work when using an advocate?
  Federal privacy rules allow clinicians to share information that is directly related to your care with family, friends, or others you identify as involved in your care, unless you object. For ongoing communication, clinics and hospitals usually ask you to sign a written authorization that names your advocate and describes what can be shared. If you want help with Medicare claims or appeals, you can formally appoint an advocate as your representative using the standard CMS form. Your Understood Care advocate can help you complete necessary forms, store copies, and make sure your clinicians know who may receive updates.
• How can I work effectively with a healthcare advocate?
  You get the most benefit when you share your goals, concerns, and top questions. Before visits, you and your advocate can create a short list of what matters most for that appointment. During visits, your advocate can take notes, request plain language explanations, ask follow up questions you approve, and confirm the plan using your own words. Afterward, you can review the summary together, schedule tests and referrals, and decide how you want updates, for example by phone, portal, or video call. It also helps to share a current medication list, allergies, and any recent changes in your symptoms or daily life.
• What tools or resources can help me and my advocate prepare for visits?
  Simple tools such as question planning cards, visit worksheets, and medication list templates can make visits more efficient. The Agency for Healthcare Research and Quality, for example, offers printable cards with suggested questions you can customize for your situation. Your Understood Care advocate can help you use these tools, tailor questions to your upcoming visit, and practice how you want to introduce your main concern at the start of the appointment.
• How does Understood Care provide advocacy support?
  Understood Care matches you with an advocate based on your health needs, personal goals, and preferences. Your advocate can help you prepare for appointments, organize your medications and history, join calls or video visits when needed, take notes, and explain next steps in plain language. They can coordinate with your clinicians about care plans, help with scheduling and transportation, assist with insurance and authorizations, and connect you with community resources for housing, food, mobility, and social support. If you need help in a nursing home or assisted living setting, Understood Care can also help you explore long term care options and connect with ombudsman resources.
• How do I get started with a healthcare advocate through Understood Care?
  If you are ready for support, you can call Understood Care at (646) 904-4027 or sign up at https://app.understoodcare.com. During a brief intake, you share your main concerns, diagnoses, medicines, and priorities. You are then paired with an advocate who understands your condition and community. Together with your advocate and care team, you will build a clear plan for communication, visits, follow up, and coordination so your care feels more organized and aligned with what matters most to you.

References

External Sources

• Centers for Disease Control and Prevention. Patient navigation overview.
  https://www.cdc.gov/cancer/php/interventions/patient-navigation.html
• National Cancer Institute. Definition of patient navigator.
  https://www.cancer.gov/publications/dictionaries/cancer-terms/def/patient-navigator
• Agency for Healthcare Research and Quality. Guide to patient and family engagement in hospital quality and safety.https://www.ahrq.gov/patient-safety/patients-families/engagingfamilies/index.html
• Agency for Healthcare Research and Quality. Patient involvement resources and Question Builder.https://www.ahrq.gov/patients-consumers/patient-involvement/index.html
• https://www.ahrq.gov/questions/question-builder/index.html
• Centers for Disease Control and Prevention. Community health worker resources and role.https://www.cdc.gov/chronic-disease/php/community-health-worker-resources/index.htmlNational Institutes of Health Clinical Center. Patient representative role.https://www.cc.nih.gov/patient-services/representative
• Cleveland Clinic. Office of Patient Experience programs and about the office.https://my.clevelandclinic.org/departments/patient-experience/depts/office-patient-experience/programs
• https://my.clevelandclinic.org/departments/patient-experience/depts/office-patient-experience/aboutCleveland Clinic. What is an ombudsman.
  https://my.clevelandclinic.org/health/articles/ombudsman
• Administration for Community Living. Long term care ombudsman program.
  https://acl.gov/programs/Protecting-Rights-and-Preventing-Abuse/Long-term-Care-Ombudsman-Program
• U.S. Government Accountability Office. Long term care ombudsman program report.
  https://www.gao.gov/products/gao-24-107209
• Centers for Medicare and Medicaid Services. CY 2024 Medicare Physician Fee Schedule final rule fact sheet.
• https://www.cms.gov/newsroom/fact-sheets/calendar-year-cy-2024-medicare-physician-fee-schedule-final-ruleU.S. Department of Health and Human Services. Individuals’ right under HIPAA to access their health information.https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/access/index.htmlU.S. Department of Health and Human Services. HIPAA guidance on personal representatives.https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/personal-representatives/index.htmlCenters for Medicare and Medicaid Services. Appointment of Representative form CMS 1696.https://www.cms.gov/medicare/cms-forms/cms-forms/downloads/cms1696.pdfCenters for Medicare & Medicaid Services
• Peer reviewed evidence on navigation and community health workershttps://pmc.ncbi.nlm.nih.gov/articles/PMC6299797/
• https://pmc.ncbi.nlm.nih.gov/articles/PMC5586005/
• Historical context of patient navigationhttps://archive.cdc.gov/www_cdc_gov/dhdsp/chw_elearning/s1_p9.htmlNational Cancer Institute. Research advocacy at NCI and the Patient Advocate Steering Committee.
  https://www.cancer.gov/about-nci/organization/oar/research-advocacy
• https://www.cancer.gov/about-nci/organization/ccct/steering-committees/patient-advocate

Internal Sources

• Care coordination
  https://understoodcare.com/care-types/care-coordination
• Help with appointments
  https://understoodcare.com/care-types/appointments
• Transportation help
  https://understoodcare.com/care-types/transportation-help
• Communication with your care team
  https://understoodcare.com/care-types/communication
• Understood Care advocates
  https://understoodcare.com/advocates‍

This information is educational and does not replace medical advice. Always consult your clinician for care that fits your needs.