Navigating Patient Advocacy: A Means to Quality Care

At Letters Foundation, we understand that health and access to quality medical care are fundamental to the well-being of our constituents, and contribute to the overall health of our communities. Although we do not pay for medical treatments, we support constituents with many of the financial burdens that are a result of unanticipated and/or unaffordable health care costs. In 2019 alone, we have directed over $375K towards medical, dental, and other health-related costs for individuals in need across the country.

Although funding is a critical part of healthcare access, it does not paint a full picture of the patient experience. For many people, navigating the United States’ complex health system can be daunting, and experiencing an illness can be an additional stressor. When going through a difficult circumstance like an illness, having a patient advocate–someone in your corner to support, guide or act on your behalf–is essential not only to alleviate stress, but also to help evaluate options and make informed decisions, including ones that reduce financial burdens.

Below, two of our community members with previous experience in healthcare–Kathiana and Sarah–reflect on the nature of patient advocacy, where and how it becomes necessary, and why it is so important.

Kathiana’s perspective below:

Trust, compassion, and respect are some of the qualities patients desire and need. Patient advocates aim to be considerate of patients’ needs and advocate for them throughout the patient’s continuum of care. In my experiences working in healthcare, I saw how the role of a patient advocate is taken on by many different stakeholders, whether a social worker, community health worker, medical interpreter, former patient, patient navigator, or other frontline staff.

Interprofessional collaboration can be seen as another form of patient advocacy as I observed how compassionate doctors, social workers, and other related staff would communicate with one another for better care coordination. Interprofessional collaboration surfaces in healthcare settings where providers seek to adopt patient-centered methods, and having this collaboration is key for improving the patient’s quality of care. In addition, most healthcare settings may have a patient advisory council, a group of former patients and caregivers who meet with clinical staff and advise on how staff can further patient-centered care efforts, and collectively serve as another form of patient advocacy from patients themselves.

In my previous role in research, I aimed to exhibit the qualities of a patient advocate, even though my role would not traditionally be viewed as such. Opportunities would present themselves in situations where I could practice trust, compassion, and respect, and would either offer a listening ear when a patient needed to vent, or offer other resources if a patient turned out to be ineligible for the clinical studies I worked on. Patient advocacy in these various roles is not always perfect, but those who are involved do the best they can within their capacity, and I have witnessed first-hand the incredible difference that it makes.

Prior to her role at Letters Foundation, Kathiana worked as a research assistant in clinical trial studies.

Sarah’s perspective below:

As a cancer patient, my mind was always a jumble about the medical maze, and this, my first real experience navigating it. I was in the facility at least once a week, and each time I walked through the door or sat in a waiting room full of people, I looked around and wondered, “how do they manage? How did they get to treatment today? Who did the groceries? The laundry? Who cooked? Who cleaned? Who paid the bills?” Some people looked terribly alone. Others were surrounded by well meaning but not necessarily helpful family members. Most people looked more than slightly dazed and all were clearly finding treatment a challenge.

Each time I went there, the routine changed. Some days I had lab work, others I went straight to see my oncologist, my chemo nurse, or to the acupuncture clinic. No visible sign posts could tell me where I should go. More than once I had an off cycle appointment that hadn’t been put into the system, which created problems. Receptionists would tell me that I didn’t have an appointment when I knew that I did, and these conversations were extremely taxing because I had to fight to be seen. I’d made the appointment personally; I hadn’t lost the ability to think. Had I been working with someone who was there to help shepherd me, it might have been different.

Each chemo appointment allowed me to cross one date off the list, but several times the list lengthened because of how I was responding to treatments. I learned early on the importance of writing everything down in a notebook, so I could review my symptoms and reactions, ask the many questions I had, and show up when I was supposed to. I’m sure I could have sought help from social workers, but I kept thinking that there were patients who needed help more than I did. I could manage myself for the most part, and I’m fortunate to have a loving family and a large network of friends who made sure I had rides, food and company — I can only imagine how insurmountable this experience would be for someone without these privileges. I never had to worry about anything but physically getting myself in the door and upstairs to treatment, which was challenging enough.

It was the cumulative effect of these bewildering experiences that got me interested in Health Advocacy once I was in remission. I kept coming back to the same thought: I couldn’t figure out how other people learned how the system worked. Being sick and feeling adrift led me to a Masters in Health Advocacy that I’ll finish next year, nearly three years after my cancer treatment. I look forward to providing the kind of essential medical support that patients like me need. The courses I’ve taken so far also help me daily in my work with our constituents at Letters Foundation; I find that my approach to problems is centered around respect and compassion for everything that people go through. We collaborate to find the best-fit solutions. We may not be able to help everyone, but we can do our best to make sure we have exhausted the avenues open to us and that we have tried as best as we can to offer some relief. Regardless of outcome, having someone who understands to help along the way makes a world of difference.

Sarah is a Program Officer at Letters Foundation, and she was a cancer patient during the fall of 2016 and winter of 2017.

Learn more about resources on patient advocacy below:

Patient Advocate Certification Board issues universally recognized certification in patient advocacy. Exams are available twice annually to anyone serving patients with an interest in proving professional credentials to both health care providers as well as patients and family care givers.

National Patient Advocate Foundation (NPAF) represents the patient voice on a local, regional, and national level, promoting access to affordable, quality health care. NPAF staff and volunteers are thought leaders in developing policies that protect patients and caregivers from lack of transparency, medical debt, and lack of access to care at key points during their illness.

Patient Advocate Foundation is a national 501 (c)(3) non-profit charity that provides direct services to patients with chronic, life threatening and debilitating diseases to help access care and treatment recommended by their doctors.