Embracing a Patient-Centered Mindset - the First Step to Effective Self-Advocacy in Health Care ​

Author: Rachel Westlake, BCPA

Purpose of Guidance: This material is non-technical and is a foundational guide for rethinking how we engage with our health and health care.

We start by emphasizing a fundamental shift in mindset: transitioning from a medical professional-centered view of health care to a patient-centered perspective. This shift is the cornerstone of effective self-advocacy. It will help you develop the confidence to navigate complex health care tasks, from understanding your insurance to planning appointments and beyond.

You may think, "I already see myself as central to my health care," or maybe you haven’t considered this before. In the U.S., people lean heavily on the expertise of medical doctors for their health and wellness needs for good reason. Physicians have undergone extensive training to understand and treat various health conditions.

Being patient-centered does not mean rejecting or bypassing the expertise of health care professionals. It means using their knowledge as a valuable resource along with your personal insights about your body and health. It's about creating a partnership with health care professionals.

Shifting this mindset to put ourselves at the center of our care can be challenging and takes effort. Remember: you are the one who experiences your symptoms, your health, and your body every day. Your input and perspective are vital to making informed decisions about your health. As you build a good care team, you can use their professional advice to guide your decisions. Together with the experts, you can make choices that are right for you, your health, and your long-term goals based on the best medical information.

A patient-centered mindset is an intention to place yourself mentally, emotionally, and behaviorally at the heart of your health care. It involves asserting your agency, which means recognizing and acting upon your capacity to manage and make decisions about your health, acknowledging when you need help, and seeking support when you need it. It's about being proactive, engaging with your care team, practicing critical thinking, and acting in alignment with your health goals. This approach encourages you to ask questions, make informed decisions about your health and supports taking charge of your health and health care rather than being a passive participant.

Defining Patient-Centered Care and Recognizing It ​

Before we delve deeper into the patient-centered mindset, it is helpful to understand what we mean by “patient-centered care.” It is health care that respects and responds to your preferences, needs, and values. It ensures that patient wants and needs guide clinical decisions, fostering a partnership between practitioners and patients, their families, and their caregivers. Varied definitions of patient-centered care since its inception in the 1960s has impacted its success as an approach to care. For now, we do not have a healthcare system that is wholly patient-centered. Some aspects of care delivery do better with a patient-centered approach than others.

How do you know if you're receiving patient-centered care? Look for:

1. Collaboration: Health care professionals work with you. They actively involve you in decision-making processes, value your input, and respect your choices.
2. Communication: Information is shared openly and you're encouraged to ask questions. Your health care team takes the time to explain medical terms, procedures, and options in a way you can understand.
3. Respect: Your care team respects your individual preferences. When proposing treatment options, they consider your lifestyle, personal circumstances, and health goals.
4. Coordination of care: Your care is well-coordinated across different health care professionals and settings. This supports cohesive plans and prevents oversight.
5. Access to care: You can access services, whether it’s booking an appointment, systems for communication with care teams, or getting your health records. Access to care is convenient and transparent.
6. Health Equity: The health care professionals you work with provide appropriate care that considers your experience and needs. The understanding of your background, ethnicity, gender, geographic location, religion, or socio-economic status doesn’t lead to discrimination; rather, it helps your care team identify needs and gaps in care so that care is tailored to support you.

The Conventional Health Care Model in the United States ​

Historically, the U.S. health care model has been predominantly medical professional–centered, often limiting opportunities for, or even discouraging, patient involvement in decision-making. But the current and larger health care landscape in the U.S. necessitates more patient engagement, fostering partnerships between patients and medical and other health care professionals. Ideally, while the patient is the final decision maker, there are barriers to that ideal, as you’ll read below and throughout the self-advocacy basics guidance material.

The Benefits of a Patient-Centered Mindset ​

When you place yourself at the center of your care, both mentally and behaviorally, you’re more likely to become a more engaged patient, which can improve the quality of your care. Engaged patients take more preventative action, follow protocols more regularly, and commit to medication and treatment plans (“treatment adherence” in the medical lingo). They manage their chronic diseases better and make decisions that improve their health. Engaged patients have fewer emergency room visits and are less frequently readmitted to hospitals because they understand and follow instructions that prevent complications.

Overall, engaged patients' communication with their health care teams can support:

• More accurate diagnoses,
• Better treatment plans
• Fewer medical errors.

Your safety as a patient is a great reason for having a patient-centered mindset in health care.

You can also make better lifestyle choices as you learn about your health. However, it’s crucial to recognize that not everyone can access healthy lifestyle choices due to financial constraints, work commitments, living conditions, or environmental factors. For example, some people live in areas where healthy, fresh food is not available or accessible (this is called “food insecurity,” and these places are sometimes called “food deserts.”)

A patient-centered mindset can extend beyond health care. It builds agency in those who practice it, encourages informed decisions, and can create ripples of confidence in one’s work, relationships, and overall life. This proactive approach to health can inspire those around you, and health professionals notice its benefits, too.

Ideally, this mindset cultivates a shared learning space for both patients and health care professionals. Patients become informed participants, and medical professionals appreciate their engagement. Your engagement can also inspire those around you.

Steps Towards Adopting a Patient-Centered Mindset ​

To actively shift your mindset to a patient-centered approach, here are a few tips:

1. Start by recognizing your right and responsibility to ask questions and your reasonable expectation to have those questions heard and answered.
2. Equip yourself with a basic understanding of the healthcare system, including insurance, insurance claims, and practice advocating in appointments.
3. Learn about motivational interviewing (link kate MI for patients) and how doctors and other professionals use it to understand your values and incentivize your behavioral change. Consider being direct upfront about your values and what outcomes you want as a way to manage and frontload the time you have with your provider.
4. Develop a habit of learning about your health conditions and treatment options, using reliable sources, and discussing what you learn with your care team.
5. Be open and honest in your communications with your care team. They can help you better when they know what’s going on, even if you’re embarrassed.
6. Don’t expect medical professionals to have access to your medical records from the other providers that you see – fill out forms for appointments ahead of time, find out what you don’t know that’s asked, and get copies of your health records so you can educate them on your health history.
7. You can even learn to read research about treatments and academic articles about health care!
8. Remind yourself: Within the current framework in the U.S., you are the “consumer” of health care. Therefore, just like with other products, your actions influence what is built for consumers and what trends persist.
9. Your confidence and patient-centered mindset will grow with practice. Though it might be challenging initially, strive to see yourself at the heart of your care. This belief will strengthen your self-advocacy.

The information in this series is designed to equip you with the skills and knowledge to navigate your health care experiences more confidently and effectively.

The Challenges of Self-Advocacy and Overcoming Them ​

Self-advocacy can be emotionally draining, and sometimes the outcome may not be what an engaged patient hoped for. It’s important to acknowledge that self-advocacy can take time—and time is a valuable resource. Learning about your health, taking time to consider and understand what you might want and need, researching treatment options, and communicating extensively with health care professionals requires a significant time investment. And since free time is limited for many, there's an associated cost to self-advocacy, a financial and mental burden that not everyone can afford.

There may be instances when despite your best efforts, the outcomes aren't as you'd hoped. A denied insurance claim or a treatment that didn’t work can be disheartening, perhaps making you question if your effort was worth it. You might feel uncertain about what to say or how to get your health team to work alongside you.

Despite these challenges, the benefits can be substantial, since you are investing in your health and your life. There is potential for each question asked and every decision made to contribute to self-growth and enhance your confidence in navigating challenges and developing communication skills. Every time you practice, it will get a little bit easier.

Harnessing External Resources for Effective Self-Advocacy ​

Sometimes, it is difficult to decide how to approach a health care challenge. We can get stuck trying to solve the problem or need an ally to step in and add their knowledge. Navigating the U.S. healthcare system is difficult, even for those who work within it! Sometimes the best form of self-advocacy is recognizing when you need help and proactively seeking it.

Independent Patient and Health Care Advocates offer a wealth of knowledge and can guide you through various processes: from understanding medical terms to dealing with insurance claims. Keep in mind that many independent advocates currently have out-of-pocket fees, but some do offer services, resources, or consults free of charge. Many hospitals and health systems have social workers, case managers, or patient navigators to assist you. They can offer valuable advice and assist with care coordination.

Asking for support from family members or friends who have had health care challenges can also be immensely helpful. Their firsthand insights can give you a clearer picture of what to expect and how to respond.

Thinking Bigger About Self-Advocacy and Patient-Centered Mindset ​

We encourage change in the healthcare system through our self-advocacy. By placing ourselves at the center of our care, we teach health care professionals about the benefits of an engaged patient. Those on your health care team have more successful cases, which is good for them too.

As a patient, there are various ways to advocate for yourself outside of your relationships with your medical practitioners. You can directly communicate your experiences and concerns to your local elected representatives. Public officials are in a position to influence policy and potentially improve conditions, but they need to hear from their communities to fully understand what the issues are.

Understanding the cost of care and hospital pricing can be an effective tool for patients to make informed decisions.

Additionally, becoming a member of patient advocacy organizations can also greatly strengthen your self-advocacy efforts. These organizations provide resources and support for their communities and often work collectively to effect change on a larger scale, such as influencing legislation or health care practices. Joining a collective group or cause may amplify your voice, helping health care change for the better for yourself and others.

Employer Health Insurance and Human Resource Professionals ​

Informed patients who receive insurance through an employer have several mechanisms to raise awareness and reduce the cost of health care. Should you discover your insurance coverage is inadequate, you can bring it to the attention of supervisors and human resource staff. In doing so, you may support their negotiating better deals with insurance providers. This impacts insurance relationships with health care professionals and institutions.

Footnote

*This author uses 'healthcare' to denote the formal system and 'health care' to refer to the wider, more holistic understanding of health management. This distinction is part of self-advocacy. By acknowledging the breadth of 'health care,' we are placing ourselves at the center and defining our health needs beyond the confines of the 'healthcare' system.

Resources ​

Consider the following resources for further reading on adopting a patient-centered mindset:

• Check out Patients Rising

• The National Patient Advocate Foundation (NPAF) is a non-profit organization that educates people about shared health care decision-making (my piece specifically discusses reasons for using health care for this purpose rather than healthcare), medical billing literacy, and health equity. Together with their sister organization, Patient Advocate Foundation, they collect and share data, publish research, and help patients voice their experiences.

This work is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International License (CC-BY-ND-4.0), available at https://creativecommons.org/licenses/by-nd/4.0/

SPDX-License-Identifier: CC-BY-ND-4.0

Signed-off-by: Rachel Westlake