Speak up. Ask questions. Take charge.
Being your own health advocate helps you catch issues early, make informed decisions and partner with your care team—so you can feel confident, supported and in control of your health every step of the way. Multiple studies in The New England Journal of Medicine (NEJM) have shown that patient self-advocacy, through shared decision-making and engagement, can improve and streamline care quality and delivery, enhance outcomes and even lower costs.
So what is health advocacy, and how can it improve health? Health advocacy is taking an active role in managing your own health and health care. It’s doing your homework before medical appointments by using trusted sources to learn about your condition, treatment options and preventive care. It’s writing down your concerns and questions and taking notes during appointments. It’s asking the doctor to speak plainly if something isn’t clear or to repeat anything you don’t understand.
Patients who help make decisions are more likely to follow through with chosen treatments, according to NEJM. Better adherence means fewer complications, emergency department visits or hospital readmissions—all of which reduce costs.
While patients who use the internet to seek medical information may be labeled as cyberchondriacs, Erik Milanez, an agent with YMA Insurance Solutions, Inc., says, “In my experience, doctors appreciate members who’ve done their homework and come prepared.”
Milanez notes how physicians today must balance both patient care and administrative responsibilities. “When patients come prepared, it helps make each visit more effective.”
He also points out that your personal doctor is the first step on your health care journey. “Your primary care physician is like your quarterback. They’re the ones playing point for you to coordinate your care up front.”
Self-health advocacy is about speaking up for yourself, staying informed and being actively involved in decisions that affect your care and overall well-being. You can also have someone advocate on your behalf or bring a significant other—friend, spouse, relative, etc.—to medical appointments.
If a patient needs an advocate to assist them, it is recommended that they sign a HIPAA release form to allow that person access to their medical information. However, if the patient requires someone to make medical decisions on their behalf, they’ll need to appoint someone as their health care power of attorney.
As an advocate for loved ones, be present and prepared. Attend appointments when possible, take notes, listen carefully and ensure your loved one’s wishes are documented. Ask thoughtful questions and inquire about options, outcomes, side effects and help coordinate aftercare. In coordinating clear communication among specialists, caregivers, pharmacists and insurance, an advocate can help avoid medication errors or conflicting treatment plans.
Milanez suggests keeping a notebook dedicated to your health care. It can be a physical or digital version, such as a health care app on your phone. Whichever method you choose, maintain organized notes of your appointments, detail your symptoms, list current prescriptions, and note doctor recommendations and questions for the next appointment. Keep records, test results, notes, etc., in one place to help you stay organized and, ultimately, to help your doctor help you. “Anything that’s going to make a big difference to your health care,” Milanez says.
Another way to advocate for yourself is to understand your insurance coverage. There are many services and resources available, especially around coordination, transitional care or advanced planning. Review the information packet that you receive from your insurance company and the annual Medicare and You handbook (sent out in late September).
When navigating the health care space and your individual needs, communicating clearly with doctors, nurses and insurers can help resolve issues. Researching your condition aids you in making informed choices that align with your needs, values and lifestyle.
But if you’re not comfortable with the doctor’s assessment or recommendation, seek out a second opinion. Most insurance plans cover that. Know your rights as a patient.
Advance care planning is another area of advocacy. Completing an advanced care directive—a legal document that states one’s preferences for medical care before possibly becoming incapacitated—and appointing a decisionmaker can ease added stress for everyone. Such planning has been shown to reduce anxiety and improve end-of-life care experiences. See torrancememorial.org/patients-visitors/advance-care-planning/ for help with Advance care planning.
Key points of being a health advocate for yourself or others:
• Do your homework.
• Keep a health care notebook.
• Bring a friend or a loved one.
• Sign a HIPAA authorization or release form.
• Know your insurance and what is covered.
• Be proactive about advance care planning.
What to include in a Health Care Notebook:
1. Personal Information
- Full name, date of birth, blood type, allergies
- Emergency contacts
- Insurance cards and policy numbers
- Do not include social security number
2. Medical History
- Past illnesses, surgeries, hospitalization
- Chronic condition
- Family medical history (if relevant)
3. Medication List
- Current prescriptions (dosage, frequency, prescribing doctor)
- Over-the-counter drugs, vitamins, supplements
- Any adverse reactions or allergies
4. Provider Directory
- Primary care doctor
- Specialists (with contact info)
- Pharmacy, therapists, home health aides
5. Appointments & Notes
- Calendar of upcoming visits
- Space to jot down questions before an appointment
- Notes from doctor visits, including diagnoses and instructions
6. Test Results & Imaging
- Lab work, X-rays, MRIs, EKGs, etc. (or at least a record of where/when done)
7. Treatment Plans
- Care instructions from providers
- Physical therapy exercises, diet restrictions, home care routines
8. Insurance & Billing
- Explanation of benefits (EOBs)
- Bills, payment records, appeals correspondence
9. Advance Care Planning
- Living will/advance directive
- Health care power of attorney
- HIPAA release form
10. Advocacy Tools
- Questions to ask providers (e.g., about risks, alternatives, side effects)
