6 ways to be your own health advocate
Maybe it’s happened to you: You head to the doctor’s office for a medical concern, and you come away more confused than ever about your health. Or you’ve felt totally misunderstood or downright dismissed during an appointment. Such feelings can be hard in any setting, but when you’re in a vulnerable position of being a patient? They’re that much more stressful.
Everyone deserves high-quality, affirming healthcare that addresses their needs and respects their humanity. Research suggests that speaking up on your own behalf could make a positive difference on that front. Patients who develop skills for self-advocating report having more favorable exam-room experiences overall—and tend to have better health outcomes, as well.
Read on for an in-depth look at what it means to be your own healthcare or medical advocate, plus expert tips to help you advocate for yourself, a closer look at challenges many patients encounter, and resources for additional support.
What does it mean to advocate for yourself?
In basic terms, self-advocating means working toward some aim on your own behalf. When it comes to healthcare, experts generally describe self-advocacy as the actions patients take to get their needs and concerns addressed when interacting with doctors and other providers.
Advocating for your health starts with a fundamental belief that you have every right to receive compassionate, quality care—inclusive of your cultural background, physical appearance, gender identity, sexual orientation, disability status, or housing or income situation, says Suzanne L. Dibble, PhD, RN, a patient advocate with the Lavender Health LGBTQ resource center in San Francisco.
Self-advocating can improve the patient experience in pretty much all scenarios, Dr. Dibble notes—whether as a proactive move (i.e., to continue building a positive working relationship with a doctor) or in situations when your needs are not being fully met.
Let’s talk about that latter point a little more: If you’ve ever felt that a care provider wasn’t exactly doing right by you, don’t assume your dissatisfaction is just in your head—particularly if you are a member of one or more marginalized groups. Knowingly or not, some healthcare professionals harbor implicit bias: beliefs and assumptions about patients based on race, gender, age, appearance, or other factors, which can influence how such professionals assess and treat patients, Dr. Dibble explains.
While not all care providers exhibit bias against all groups, some patterns brought to light in studies include: taking women’s pain less seriously than men’s, being overly patronizing with older patients, assuming patients in larger bodies lack willpower, recommending sterilization more often for Black and Native American women, overdiagnosing schizophrenia among individuals from racial minority groups, disregarding the gender identity of LGBTQIA+ individuals, and being less inclined to treat patients who are living with disabilities.
While the medical establishment works to address various forms of bias with better training, self-advocacy may be helpful for reducing the negative effects, says Dr. Dibble, who also serves as professor emerita at University of California, San Francisco’s School of Nursing.
Again, though, the value of self-advocacy isn’t always rooted in a provider being insensitive or exhibiting bias. Self-advocacy also serves as a collaborative strategy for getting the most out of any care scenario, including with a compassionate provider who has earned your trust.
6 tips for self-advocating at the doctor
Whether you’re searching for a new doctor, requesting more info about a medication, or respectfully disagreeing with a diagnosis, here are some tips for being your own best advocate.
1. If possible, compare providers
Seeking out a care professional who is aligned with your personal background, values, and needs may reduce negative experiences overall, Dr. Dibble says. Provider directories that serve specific communities include the Association for Size Diversity and Health, Health Professionals Advancing LGBT Equality, Black Female Therapists, and World Professional Association for Transgender Health.
General directories may help you suss out leads, as well, says Adria Goldman Gross, FIPC, president of MedWise Insurance Advocacy and author of Solved! Curing Your Medical Insurance Problems. For example, Castle Connolly’s Top Doctor Database aggregates providers nominated by professional peers for outstanding performance. Patient reviews on websites such as ZocDoc and Healthgrades may provide anecdotal clues about a provider’s bedside manner, cultural sensitivity, and other qualities. Many directories let you filter by providers’ languages, as well.
Even if your choice of providers is limited, it may help to contact an office directly and ask—anonymously or otherwise—about their level of experience with situations similar to yours, so you can feel informed about deciding whether and how to move forward with them, says Gross. Questions might include, “Can you tell me about this provider’s experience treating trans patients?” or “Is this provider trauma-informed?”
2. Minimize billing surprises
As a part of self-advocacy, it’s wise to broach the subject of financial costs, says Bonnie Sheeren, BCPA, an independent health advocate in Houston. For patients with health insurance, “call your doctor’s office and your insurance company to verify your plan covers any providers you plan to see,” Sheeren says. “Sometimes a provider thinks they’re under your plan but they’re not.”
And while billing details can sometimes feel like a mysterious taboo in care settings, you deserve to know the price tag of a visit, procedure, test, or treatment—before the service is rendered, Dr. Dibble says. So don’t be shy about asking. One good thing to know: Such costs are often negotiable. Says Dr. Dibble, “If you’re paying out of pocket, ask about sliding scales or cash discounts.”
3. Have your history handy
Dr. Dibble recommends creating something she calls a “body résumé” for use during medical visits. A body résumé compiles key facts about your history in a concise format—and as such can serve up useful insights to make healthcare visits more productive, Dr. Dibble explains. A body résumé—which you can share directly with your providers or simply keep handy for your own reference—might include:
- Family history of disease with a focus on first-degree relatives
- Diagnoses and procedures you’ve received and undergone, including dates
- Names and dosages of any medications and dietary supplements you take
- Medically relevant info concerning intimate partnerships (e.g., styles of contraception you use)
- Allergies to foods or drugs
- Use of alcohol, cigarettes, or recreational drugs
One important note: Disclosure around some of the above items may feel emotionally unsafe for some patients, and that’s valid. You are ultimately in charge of deciding what to share about yourself and when, Dr. Dibble says. If at any point your provider reacts with shaming or stigmatizing language, remember that all patients are entitled to affirming, respectful communication. If you’re comfortable pushing back, you might try a response like, “I shared the information about my alcohol use to help you develop a fully informed care plan for me—not to invite judgment.”
4. Share questions *and* concerns
Does a provider’s recommendation seem confusing or iffy? You are 100% allowed to let them know. “[This], however, may be hindered by feeling too intimidated by a provider’s expertise to speak up,” Dr. Dibble says. So know this: A doctor’s job isn’t just to issue “doctor’s orders”; it’s also to help you understand your own health—and to take your questions and concerns seriously.
One technique to try: Pair a concern with an open-ended question. For example: “I worry that your advice to lose weight doesn’t fully address the unusual shoulder pain I’ve described. What are some additional things that might be at play?”
And even then, it’s normal and OK to still need more info to figure out what’s best for you. “Don’t hesitate to request referrals, resources like support groups or literature, or health advocate services,” Dr. Dibble says.You might try a statement like, "I still have a few questions before I move ahead with this advice. Can you meet for 10 more minutes, or should we schedule a follow-up conversation for a time that works better for you?"
5. Consider bringing a companion
Having a plus-one in the room might be helpful if you’re feeling overwhelmed by a new diagnosis, worry you won’t remember new info, or simply would feel better with a familiar presence by your side, Dr. Dibble says. (Dialing in a pal on your phone may also be an option.) Clarify with your companion what you need—e.g., a note taker, or someone to ask questions on your behalf?—so they can support you in the best way possible.
6. Document the visit
It might feel a bit weird to take notes when the subject is you, but this practice can come in handy for those of us who tend to forget details the moment we leave an appointment. Bring a pen and paper, tap out a draft on your phone, or use your phone’s voice-memo function to record the visit while it’s happening, Dr. Dibble recommends. While you’re at it, be sure to request copies of any lab results or scans you undergo. This saves you the hassle of having to make a last-minute request for medical records if you end up visiting another provider.
Checklist for good doctor-patient communication
Good doctor-patient communication has been shown to increase patient satisfaction, help patients understand and feel more in control over their wellbeing, and guide doctors toward more accurate diagnoses. How do you know if you and your doctor are communicating well? Here, Gross lists eight signs of a healthy dialogue:
- Your provider helps you feel heard and respected.
- Your provider explains the reasoning behind diagnoses, as well as any treatments they recommend.
- Your provider refrains from expressing personal judgment about any aspect of your health status or life.
- Your provider allows adequate time to answer questions in terms you understand.
- Your provider doesn’t talk down to you.
- Your provider is forthright around the risks, benefits, and costs of treatments or tests they recommend.
- If your provider is unable to answer a question, they are helpful in referring you to a source of information.
- Your provider demonstrates flexibility in developing treatment approaches that reflect your values and preferences.
When to consider an outside patient advocate
Not everyone has the energy or bandwidth to self-advocate at all stages of care. That’s totally understandable—and that’s when enlisting a third-party patient advocate might be a good idea. Healthcare advocates and health-advocacy groups work to help patients understand diagnoses and treatment options. They may communicate directly with healthcare providers, manage medical appointments, and set up home care or transportation services. They may also help patients negotiate medical bills and insurance issues.
For more information on working with a healthcare advocate, Sheeren recommends consulting the National Association of Healthcare Advocacy or Greater National Advocates, or try searching online for patient advocates in your area. Patient-advocacy organizations also exist to support specific concerns, examples including the National Alliance on Mental Illness, Breast Cancer Action, and National Patient Advocate Foundation (serving those living with chronic, debilitating, or life-threatening illnesses).
The upshot: Advocating for yourself may lead to better care
Advocating for yourself in healthcare settings may sometimes feel daunting. Strategies such as choosing culturally sensitive providers, keeping your personal info organized, and bringing along a companion may make self-advocating easier—and could make a difference in how well your care providers respond to your needs, values, priorities, and concerns. Always remember: In addition to deserving high-quality care, you deserve a say in how that care is managed. Self-advocacy starts with that foundational belief.
Katherine Schreiber, MFA, LMSW, is a social worker and freelance journalist in New York City. She is the author of The Truth About Exercise Addiction: Understanding the Dark Side of Thinspiration. Follow her on Twitter @ktschreib.
This article was reviewed for accuracy in June 2021 by Christi Smith, MS, CSCS, associate manager for science translation at WW. The WW science team is a dedicated group of experts who ensure all our solutions are rooted in the best possible research.