Having the power to affect one’s own health care journey can be particularly invigorating for patients dealing with chronic conditions or anyone serving as a caregiver. I recently attended a workshop on consumer health advocacy, led by health advocate and liaison Santisha Walker, RN, who brought a wealth of information and strategies to help attendees better navigate the health care system.
As I have directly experienced the need for self-advocacy across my own experiences in the health care system, I found this information deeply valuable. Santisha stated that she believes self-advocacy bolsters mental wellness, “because when you know how to advocate for yourself, you feel better.” With that goal in mind, I’m sharing some key takeaways and tips from the session.
Understanding Health Advocacy
Health advocacy strives to meet unmet needs by improving care access, helping patients navigate the system, connecting them with resources and addressing health inequities. Advocates can come in many forms: nurses, social workers, hospital administrators, lawyers, care coordinators, caregivers and former and current patients.
Advocates can’t be everywhere at once, especially given ongoing staffing shortages. Santisha explained that self-advocacy equips patients to effectively understand their rights, communicate with their care teams and make informed medical decisions.
The Power of Self-Advocacy
52% of American patients struggle to navigate the complexities of the health care system without assistance, according to the Harvard Business Review, driving high health care costs and worsening outcomes. The study also found that one in four consumers have a high need for health care interventions and low understanding of the health care system. This didn’t surprise me; I read and write about health care daily and find that many aspects of our convoluted system take hard work to grasp.
Self-advocacy requires us to understand when we need help and ensure we get the kind we need—asking questions and politely pushing back, if the situation calls for it. As patients, we should always be attuned to our own instincts, listen to our bodies and communicate clearly and openly.
Common Challenges Self-Advocacy Can Address
The ever-changing, complex health care system can feel overwhelming and intimidating, while a lack of understanding reduces confidence and prevents people from speaking up.
Consumers may also face physician cognitive bias or medical gaslighting—their concerns being dismissed or trivialized. Women and people of color are particularly likely to experience these, which can increase risk of misdiagnosis and other problems. I spent years with both undiagnosed and misdiagnosed conditions and injuries. I don’t blame the doctors who didn’t dig deeper to find the true issues as I believe that medical protocols and unconscious bias likely played a role. But it was definitely a learning experience—I know now that the more information I provide and the more questions I ask, the better.
How Self-Advocacy Can Help
Equipping patients with information and a sense of autonomy to address challenges head-on can minimize frustration and prevent detrimental health outcomes. A self-advocate can meet with providers to address upcoming treatment, ask questions about medication and make sure they get the care they need.
“Activating patients, putting them in a place where they’re taking actions to ask questions and interrupt when necessary to ensure needs are met can override the patterns of care and biases that physicians may hold about expected patient behaviors. These findings can be an antidote to feelings of hopelessness. The idea that patients have control over the situation is encouraging.” — Dr. Jennifer Griggs of Michigan Medicine.
Tools and Resources for Self-Advocacy in Healthcare
Santisha shared the following tips to strengthen self-advocacy:
- Know your rights as a patient
- Know baseline values such as heart rate, blood pressure, etc.
- Prepare for care team interactions with questions in order of importance
- Identify and convey your values
- Rely on your community and network
- Understand your role and your physician’s role
- Review your medical records
- Assess your biases and attitude — be assertive but polite
- Know how to contact advocacy resources
- Recognize and withstand medical gaslighting
- Beware medical cognitive bias
- Develop follow-up plans with care team and take notes
- Listen to your body
- Identify reputable online resources*
Santisha also shared these resources for getting help with advocacy:
- Patient Advocacy Foundation
- National Patient Advocacy Foundation
- Nurses, other healthcare professionals, nurse aides
- Advocacy departments within health care facilities (can be limited as they work at the company that pays them, but can help with immediate needs)
- Private companies (unlimited): Greater National Advocates, Whitley Patient Advocates; Walker Group Health & Wellness—see Santisha’s eBook and “Your Nurse Advocate” YouTube channel
* Tip: When looking for resources, .edu, .gov and .org are typically reputable—if using .com, make sure they’re citing strong sources!
Patients’ Stories Underscore the Need for Self-Advocacy
The session concluded with participants reflecting on their own experiences with self-advocacy improving their outcomes. As I’ve referenced, I’ve had my own fair share of these. I sprained my ankle badly in high school, facing chronic instability and repeated sprains. I was told that surgery was a necessity, but that I’d need months to relearn how to walk, and all during my first year of college. My mother—my number-one health care advocate growing up—expressed concerns and insisted on getting a second opinion. Later, after learning more about how to better advocate for myself, I sought a third opinion and learned that I should’ve been in physical therapy all along. Since I’ve started PT, I’ve built strength and stability while reducing injury. I am deeply grateful to my mom for instilling in me the skills of seeking information and speaking up for myself.
In some cases, self-advocacy can be a life-saver. One man in the session shared that years ago, he pushed back against a doctor initially dismissing his concerns about a mole, which led to the discovery that it was cancerous and drove its removal. Many attendees at this workshop emphasized the importance of patients assertively articulating needs and seeking a care team that acknowledges and respects their values.
Santisha’s workshop offered empowering guidance for patients to proactively advocate for more comprehensive, tailored health care. The power of being an active participant can be transformative. May we all move forward with the confidence in our ability to learn about and understand our care and ask questions or seek help when we don’t.