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.

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
• Managing neuropathy medication side effects
  https://understoodcare.com/healthcare-info/managing-neuropathy-medication-side-effects
• Understood Care advocates
  https://understoodcare.com/advocates

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