When Dr. Charlie Seltzer, M.D. sees a patient for the first time at his weight-management practice in Philadelphia, he knows the first 15 minutes will be spent building trust—a radical approach considering most of us are lucky to get 15 minutes with a healthcare provider…total.
"Many of my patients are coming from other healthcare providers who have displayed some type of weight bias, and spoken in a dismissive way about their weight," he says. "They become used to being unheard, and that leads to a feeling that what they say doesn't matter. But nothing could be further from the truth.”
That's where self-advocacy comes into play. Like changing any behavior, it can take time, effort, and practice to do, especially if you've been subjected to weight bias. But the results can be profound: Research suggests that speaking up on your own behalf could lead not just to better appointments, but also more favorable health overall.
What does it mean to advocate for your health?
Experts generally describe self-advocacy as the actions patients take to get their needs and concerns addressed when interacting with healthcare providers. And it starts with a fundamental belief that you have every right to receive compassionate, quality care—inclusive of your weight, cultural background, physical appearance, gender identity, sexual orientation, disability status, or housing or income situation, says Suzanne L. Dibble, Ph.D., a patient advocate with the Lavender Health LGBTQ resource center in San Francisco.
While not all healthcare 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.
"Self-advocacy is re-inserting the patient perspective into the narrative," says Faith Newsome, Ph.D.(c), a researcher specializing in obesity at the University of Florida College of Medicine who has experience in advocacy work for people living with obesity. "For many years, interactions between healthcare providers and patients living with overweight and obesity often resulted in a simple prescription of eating less and moving more. In the healthcare setting, self-advocacy allows patients to assert that weight management isn’t that simple, encouraging a collaborative conversation about the patients’ goals and the best ways to move forward in achieving them."
The value of self-advocacy, however, isn’t always rooted in a provider being insensitive or exhibiting bias. Self-advocacy also serves as a way for getting the most out of any care scenario, including with a compassionate provider who has earned your trust.
5 tips for self-advocacy
Whether you’re searching for a new healthcare provider, requesting more info about a weight-management medication, or respectfully disagreeing with a diagnosis, here are some tips for being your own best advocate.
1. Take notes
It might feel a bit weird to take notes when the subject is you, but appointments often include so much information that it's handy to have notes rather than rely on your memory, suggests Dr. Robert Kushner M.D., professor of medicine and medical education at Northwestern University of Feinberg School of Medicine. 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.
2. Voice concerns and ask questions
Does a provider’s recommendation seem iffy? You are 100% allowed to let them know. 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?”
3. If necessary, switch providers
If, after all this, you still don’t feel aligned with your provider, seek out someone new, says Michelle Cardel, Ph.D., R.D., senior director of global clinical research and nutrition at WeightWatchers®. "Weight bias and discrimination is pervasive, including among healthcare providers, and it is essential to have a healthcare provider who you trust and who listens and incorporates your concerns into medical care and treatment." For example, you want someone who isn't hyper-focused on what the scale says, and instead can look at the bigger picture of how your weight impacts your health and quality of life (something known as weight health). One place to find a provider like that: WeightWatchers Clinic, which gives you access to an entire care team trained in compassionate care.
General directories may also help you suss out leads. 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 can give you anecdotal clues about a provider’s bedside manner, cultural sensitivity, and other qualities.
You can also explore the provider directories of more community-specific organizations, like these:
- Obesity Action Coalition
- Health Professionals Advancing LGBT+ Equality
- National Black Leadership Commission on Health
- World Professional Association for Transgender Health
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. Questions might include “Can you tell me about this provider’s experience treating patients with overweight?” or “Does this provider have a background in obesity medicine, or experience in that specialty?”
4. Minimize billing surprises
As a part of self-advocacy, it’s wise to broach the subject of financial costs, says Newsome. She's often seen patients build their advocacy skills by talking with insurance companies about coverage of certain treatments, such as prescription weight-management medications.
Those same tactics come in handy when speaking with a provider's office as well, she adds. For example, that might look like asking about a co-pay in advance, making sure specific providers are covered by insurance—sometimes, even within the same practice, healthcare providers are covered differently from one another—and understanding the billing process overall. 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.
5. Prep for your appointment
Preparing in advance is crucial for making the most of your appointment time, and can help you feel more comfortable in advocating for yourself, according to Kushner. "Patients often feel rushed or nervous, and may end up leaving an appointment feeling like they didn't get to discuss what they really wanted,” he says. “Coming in with a list of topics —just four or five—is very helpful for preventing that.”
Preparation should also include an accounting of your medical history and a willingness to be open and direct about it. After all, this is information your provider will need in order to create the best treatment plan with you and for you.
Checklist for good provider-patient communication
Good provider-patient communication has been shown to increase patient satisfaction, help patients understand and feel more in control over their well-being, and guide doctors toward more accurate diagnoses. How do you know if you and your healthcare provider are communicating well? Here, Seltzer 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 a situation when enlisting a third-party patient advocate might be a good idea. Healthcare advocates and health-advocacy groups work to help patients understand their diagnosis 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, consider consulting the National Association of Healthcare Advocacy or Greater National Advocates, or try searching online for patient advocates in your area.
The bottom line
Advocating for yourself in healthcare settings may feel scary. Strategies such as choosing culturally sensitive providers, keeping your personal info organized, and preparing questions in advance of your appointment may make self-advocating easier—and could make a difference in how well your care providers respond to your needs, values, priorities, and concerns. Remember: In addition to deserving high-quality care, you deserve a say in how that care is managed.