Empowering Patients to Become Self-Advocates

By Aysha Ahmed, PharmD

We live in a time and place where insurance companies and corporations, rather than healthcare providers, dictate the medications, procedures, and services patients are allowed to receive. Even the most herculean efforts by the most dedicated providers cannot create an escape from the limitations and frustrations created by this restrictive dynamic. It leads to a delivery of care that is disconnected, overwhelming, and leaves patients lost and afraid of the medical, emotional, mental, physical, and financial burdens that come with accessing care. More importantly, it widens the gap between those patients who can advocate for themselves and those who don’t know how, deepening disparities in healthcare for those who are already most at risk. As healthcare providers, we can fill and permanently seal this gap and create equity in healthcare for all patients by first standing in as their advocate and then empowering them to advocate for themselves. 

Most patients don’t come properly equipped for self-advocacy.

To healthcare providers, patient self-advocacy is a no-brainer. It is proven that self-advocacy reduces the risk of error and harm to patients in hospital and clinical settings, and ensures that patient needs are met, preferences are acknowledged, and individuals maintain control over their care and, when necessary, their recovery. 

However, for patients self-advocacy isn’t always as easy as healthcare providers think it should be. That struggle is likely rooted in patient confusion and a lack of confidence in their own understanding of medical information. A recent study by the American Health Information Management Association, or AHIMA, found that nearly two-thirds of patients are unsure of their ability to understand the information that they’re discussing at a health appointment. Too often, the answer to this scenario is that a patient should be their own advocate and ask more questions. But for those patients who don’t understand what their provider is saying, being their own advocate is easier said than done, and asking more questions may not be the best answer. After all, if you don’t know what you don’t know, then you probably don’t know what questions to ask. And the problem only gets bigger when patients leave the appointment:  that’s when, according to AHIMA, 42 percent of patients go home and use the internet to figure out what just happened. This breakdown in communication leaves patients voiceless victims of the very health system that is supposed to help them get and stay well, searching for anyone, anywhere who will help them to understand. 

Instead of putting the onus on patients to divine the right questions like they’re contestants on Jeopardy, it’s up to healthcare providers to educate patients properly and accessibly on their health and wellness, and to empower them to take charge of their healthcare once and for all. 

Empowering patients to self-advocate starts with changing how you communicate. 

Self-advocacy skills don’t come naturally to everyone, and in the case of healthcare, most patients don’t have the skills to articulate their needs, concerns, or gaps in their understanding. Because they don’t know what questions to ask to get to that understanding, we as healthcare providers have to build a strong foundation for them to start from. What that means is approaching patients with information that makes sense to them. 

If you got a nail in your tire, you wouldn’t expect the mechanic to describe it as a long, foreign object with a spear point that entered the exterior side of the back left pneumatic tire, causing it to rapidly deflate. In fact, that description might make it difficult to ask questions and understand the next steps. For the majority of patients, that’s what most medical information sounds like. But for patients to become self-advocates, they have to understand what you’re saying. 

Equally as important to delivering medical information in a digestible way is leaving space in the appointment for questions and concerns, or anything else your patient wants to say. But most health appointments are rushed, giving the patients just minutes with their provider, and it never seems to be enough to bring up the issues they’ve written down or the ones they thought of as you were talking. For patients to become self-advocates, they have to have both the time to ask questions and your attention. 

Creating self-advocates requires involving patients in their medical decisions and giving them time to think about it. 

Making space for patient engagement increases the likelihood of success for any given treatment plan. A study from the National Center for Biotechnology Information found that the relationship between doctors and their patients determines patient engagement levels, and perhaps even more importantly, whether or not providers get the information they need to make accurate diagnoses and helpful treatment plans. 

But most health providers don’t give patients the opportunity to mull over selected treatment plans. In fact, most doctor-patient health conversations go something like this: “Your lab work came back and shows that your Vitamin D is low so we’re going to put you on 50,000 IUs of Vitamin D for one month and then recheck.”

But imagine a doctor-patient conversation that instead starts something like this: “Based on your self-reported fatigue we checked your Vitamin D levels and they were low. Usually what we do in this case is prescribe a high dose of Vitamin D for a short time and see if that helps. What do you think of taking a capsule every day?” 

Active questions combined with active listening are far more likely to create positive feedback loops for patient care. And that positive feedback loop is really what it all comes down to. 

When patients understand the information they’re being given is enough to share their concerns, ask questions, have a meaningful conversation with their healthcare provider, and make informed decisions, they will naturally transform into self-advocates. But they cannot get there, or remain there, on their own. It’s up to us as healthcare providers to change the way we communicate with patients — how we share information, how and whether we ask questions, how we listen, and how we create space for thoughtful decision-making — that will build foundations for empowering patients to take control of their healthcare once and for all. 

Aysha Ahmed, PharmD, is the Chief Medical Director, President and Co-Founder of HealthIV™ and Vasa Health™. At the helm of HealthIV and Vasa Health, Ahmed coordinates medical collaborations and sets priorities for the development of the company’s health offerings and services. She also serves as the primary staff practitioner, taking a keen interest in the wellbeing of patients. Dr. Ahmed brings a wealth of experience in medicine and pharmaceuticals to infusion therapy and digital healthcare. She previously spent a decade building a network of women-owned and operated specialty pharmacies and clinical centers in New York, New Jersey, Texas, and Florida. She holds a PharmD and bachelor’s degree in biochemistry, and is expected to receive a doctoral degree in naturopathic medicine from the Boucher Institute of Naturopathic Medicine in 2022. Dr. Ahmed’s patient-centric, multidisciplinary healthcare approach is now the subject of study throughout the healthcare industry. Her primary goal at HealthIV is to ensure that medical care and health support are delivered to patients in the safest, most accessible ways possible.