Dr. You

Navigating the U.S. healthcare system is complicated. Research shows that you can take control and improve your health outcomes by being your own advocate. This section guides you through each step for self-advocacy.

Patient Story – (The story is true; the patient’s and provider’s names have been changed.)

Tina, 38, experienced persistent headaches and blurred vision. Despite multiple visits to an optometrist and an ophthalmologist, she was repeatedly told that nothing was wrong and that she just needed new glasses. Unsatisfied with this diagnosis, Elaine sought a third opinion, which led to a referral to a neurologist. The neurologist discovered that Elaine had a brain tumor compressing the nerve to her right eye. By advocating for herself and seeking additional medical opinions, Tina was able to get the correct diagnosis and necessary treatment.

Why Advocate for Yourself?

• Improved Safety and Quality: By actively participating in your care, you can help minimize risks, improve the quality of treatment, and manage healthcare costs more effectively.
• No Guarantees: While your primary care physician (PCP) may offer some support, their time and resources are often limited. Ultimately, no one knows your body, health history, and preferences better than you.
• Conflicting Interests: Healthcare professionals, including doctors and insurance providers, have multiple responsibilities and financial considerations that may not always align with your best interests.
• Empowerment and Better Outcomes: Self-advocacy can lead to a greater sense of control, faster recovery, reduced risk of errors, and potential cost savings.

Key Steps to Effective Self-Advocacy

Know Your Legal Rights

Familiarize yourself with your rights as a patient. You have the right to respectful and considerate treatment from all healthcare providers. Your rights include:

• Right to informed consent: Patients have the right to receive information about their health status, treatment options, and potential risks before making decisions about their care.
• The right to choose your doctors, replace them if necessary, and refuse any test or treatment (unless otherwise dictated by law).
• Right to privacy and confidentiality: Patients have the right to keep their medical records private and secure.
• Right to access medical records: Patients can request and receive their medical records in a timely manner.
• Right to refuse treatment: Patients can decline recommended treatments or procedures.
• Right to be treated respectfully and without discrimination: Patients are entitled to respectful care regardless of personal characteristics.
• Right to a safe care environment: Patients can receive care in a safe setting, free from abuse or harassment.
• Right to participate in care planning: Patients can be involved in developing and implementing their care plan.

Caregiver Rights

• Family and Medical Leave Act (FMLA): Eligible employees can take up to 12 weeks of unpaid, job-protected leave per year to care for a family member with a serious health condition.
• Protection against caregiver discrimination: While not explicitly covered by federal law, some states and cities have laws prohibiting discrimination based on caregiver status.
• Caregiver Advise, Record, Enable (CARE) Act: In states where it has been enacted, this law allows patients to designate a caregiver who must be notified and educated about home-care instructions upon hospital discharge.
• Paid Family Leave (PFL): Some states offer PFL programs that provide partial wage replacement for employees taking time off to care for family members.
• Americans with Disabilities Act (ADA): While primarily protecting individuals with disabilities, the ADA may offer some protections to caregivers in certain situations.
• It’s important to note that specific rights and protections may vary by state and local laws. Patients and caregivers should familiarize themselves with both federal and state-specific regulations to fully understand their rights.

Understand Your Body

• Document your medical history and family health history.
• Pay close attention to any changes in your body functions, especially pain or unusual symptoms.

Educate Yourself

• Learn as much as possible about your condition from reliable sources (see “Reliable Sources of Information” below).
• Thoroughly understand your health insurance coverage. Contact your insurance provider to clarify any questions about your plan’s benefits, copays, deductibles, and covered services.

Make Your Voice Heard

• Communicate clearly and respectfully with your healthcare team.
• Utilize various forms of communication, including speaking, sign language, or assistive technology.
• Pay attention to your body language and maintain eye contact during in-person meetings.

It’s important to note that specific rights and protections may vary by state and local laws. Patients and caregivers should familiarize themselves with both federal and state-specific regulations to fully understand their rights.

Speaking Up in Hospitals and Nursing Homes

Top Tips

• Address concerns immediately with your doctor, nurse, or unit manager.
• Clearly state the problem and what you expect to be done to resolve it.
• If you do not receive a timely response, contact the hospital’s customer service, patient advocacy, or patient safety/quality department.

Preparing a Hospital Kit (Adapted from Hassans Hopkins Medicine)

Before heading to the hospital or treatment facility, assemble a kit containing:

1. Your medical information (conditions, history, etc.)
2. Medication list (names, dosages, frequency)
3. Allergies
4. Contact information for your physicians.
5. Insurance information
6. Contact information for a designated person to speak on your behalf, if needed.

Additional Tips for Hospital Stays (Adapted from Hassans Hopkins Medicine)

1. Bring someone to help advocate for you.
2. Ask questions about medications, tests, procedures, and the doctors you will see.
3. Follow your doctor’s instructions to start moving as soon as possible.
4. Encourage visitors to wash their hands or use hand sanitizer to prevent infections.
5. Discuss discharge and care coordination plans before leaving the hospital. Request a copy of your discharge summary for yourself and your primary care physician.

Essential Advocacy Skills

1. Understanding Your Health Insurance

• Write down your insurance questions.
• Call customer service.
• Explain your situation clearly.
• Ask your questions.
• Inquire about a dedicated contact person for future questions.
• If uninsured or using public assistance, contact your state health department or BenefitsCheckUp (www.benefitscheckup.org) for coverage details and assistance programs.

2. Research and Information Gathering

• Use reliable sources (see list below) to learn about your illness or condition.
• Remember that no single healthcare professional has all the answers.

3. Communication

• Ask questions and express your needs clearly to your healthcare team.

4. Problem-Solving

• Be prepared to make decisions about second opinions, tests, treatments, finding a new doctor, choosing a hospital, participating in clinical trials, and more.

5. Negotiating

• Negotiate for desired outcomes, such as earlier hospital discharge, alternative prescriptions, service discounts, or fee reductions.

6. Preparation

• Do your research, keep records, suggest solutions, maintain an open mind, and collaborate with others to solve problems.
• Connect with other patients and caregivers for shared experiences and insights.
• Speak with other patients and caregivers who have already experienced what you are just beginning.

7. Writing a Complaint Letter

If issues are not resolved through conversation, write a formal complaint letter to the provider, hospital/nursing home, and/or state regulatory agency. Include:

1. Your name, address, and phone number.
2. Dates of treatment.
3. Names of involved healthcare providers.
4. A concise overview of your complaint.
5. Desired resolution.
6. Copies of supporting documents (keep originals).
7. Consider sending copies to relevant parties.
8. Keep originals organized in a safe place.

Free Help and Resources

• Patient Advocate Foundation: (http://www.patientadvocate.org/ or 800-532-5274) Offers free case management services.
• BenefitsCheckUp: (www.benefitscheckup.org) Helps find free programs and services.

Free Helplines for Specific Diseases and Illnesses(Phone numbers may change. Always verify the number before calling.)

• Advanced Biotech Therapies: 855-845-3663
• AIDS: 877-296-9264
• American Cancer Society: 800-227-2345
• American Kidney Fund: 800-638-8299
• BenefitsCheckUp: 202-479-1200
• Blood & Marrow Transplant Info. Network: 888-597-7674
• Breast Cancer: 800-977-4121
• Breast Cancer Assistance Foundation: 410-825-9388
• Breast Cancer; Susan G Komen: 800-808-7866
• CancerCare: 800-813-4673
• Cancer Hope Network: 800-552-4366
• Cancer Research: 800-843-8114
• Childhood Cancer: 855-858-2226
• Childhood Cancer; St. Jude Children’s Hospital: 866-278-5833
• Childhood Illnesses: 877-242-4543
• Chronic Disease Fund: 877-968-7233
• Chronic Illnesses: 888-267-1440
• Colon Cancer Alliance: 877-422-2030
• Kidney Failure: 800-891-5390
• Leukemia & Lymphoma Society: 800-955-4572
• LIVESTRONG Foundation: 855-220-7777
• Long Term Care: 202-357-3555
• Lung Cancer Alliance: 800-298-2436
• Medicare Advocacy: 800-456-7790
• Medicare Rights: 800-333-4114
• Mental Illness: 800-950-6264
• Myeloma Foundation: 800-452-2873
• National Bone Marrow Transplant Link: 800-546-5268
• National Cancer Institute: 800-422-6237
• National Center for Complimentary & Alternative Medicine: 888-644-6226
• National Domestic Violence: 800-799-7233
• National Eye Institute: 301-496-5248
• National Kidney Foundation: 855-653-2273
• National Mental Health & Substance Abuse: 800-662-4357
• National Patient Travel: 800-296-1217
• National Patient Travel, (Stroke & Neurological Disorders): 800-296-1217
• National Sexual Assault: 800-656-4673
• National Stroke Association: 800-787-6537
• National Suicide Prevention: 800-273-8255
• Ovarian Cancer: 800-682-7426
• Pancreatic Cancer: 877-272-6226
• Patient Access network Foundation: 866-316-7263
• Patient Advocate Foundation: 800-532-5274
• Prescription Drugs: 800-503-6897
• Prescription Drugs: 877-267-0517
• Prostate Cancer: 800-808-7866
• Psoriasis: 800-723-9166
• Rare Disorders: 203-744-0100
• Veterans Crisis Line: 800-272-8255 (Press #1)

Patient Advocacy Organizations

• Consumers Advancing Patient Safety: http://patientsafety.org/
• Empowered Patient Coalition: http://empoweredpatientcoalition.org/
• Hospice Patients Alliance: http://hospicepatients.org/
• Medically Induced Trauma Support Services: http://www.mitss.org/
• National Family Caregivers Association: http://caregiveraction.org/
• Patient Advocate Foundation: http://www.patientadvocate.org/

Rights for Patients with Disabilities

Under the Americans with Disabilities Act (ADA) and Guide 504 of the Rehabilitation Act of 1973, individuals with disabilities have the right to accessible healthcare services. Healthcare providers must ensure equivalent access to services for people with disabilities.

Resources for People with Disabilities

• American Foundation for the Blind: Disability Rights Resources for People with Vision Loss: http://www.afb.org/info/programs-and-services/public-policy-center/disability-rights-resources/125
• Americans with Disabilities Act: https://www.ada.gov/
• Advocating Change Together: http://www.selfadvocacy.org/index.htm

Additional Tips for Self-Advocacy

1. Understand your health insurance.
2. Prepare questions for your doctor(s) and healthcare providers.
3. Maintain your own medical records.
4. Review your medical bills for errors.
5. Know when to ask for a second opinion.

Reliable Sources of Information

Your Doctors and Healthcare Team are your primary source of information regarding your specific condition and treatment options.

Internet Health Portals

• National Institutes of Health (NIH): https://www.nih.gov/
• Centers for Disease Control and Prevention (CDC): https://www.cdc.gov/
• Mayo Clinic: https://www.mayoclinic.org/

Professional Medical Associations

• Organizations like the American Medical Association (AMA) or specialty-specific associations (e.g., American Heart Association) often provide patient-friendly information.

By taking an active role in your healthcare, you can improve your outcomes, reduce costs, and feel more empowered throughout your journey.