The Patient and Family Advisory Council

Photo by L. Laguna

This summer, I had an appointment at my hospital. I had a negative interaction with a medical provider. It was not the worst in the world; it was not the best either. Initially, I decided not to share my feedback with the hospital, but I later opted to call and share my experience with its staff. My intention was to take a developmental approach to the situation. As the environment of this country has evolved in the past couple months, I felt responsible for doing what I can to make it better. The following is a statement I wrote as part of my application for the hospital’s advisory council for patients and families.

This statement has been edited for confidentiality purposes.

In July, I called Patient and Family Relations at Hospital C to share a negative interaction I had with a healthcare provider.  Basically, the incident related to racial issues, and I believe the situation could have been addressed differently, especially after the George Floyd case.  I did not want to shame or have any disciplinary action taken against the provider, but the incident made me curious to learn how Hospital C was addressing racism.  After all, cities across the country are calling racism a public health crisis. If that is the case, what are its implications for cancer care? As I researched the topic, I came across the article [hyperlink to article on racial disparities in cancer care] by researchers at Hospital C. This tells me that Hospital C already understands that there is a need to consider issues of diversity, equity, and inclusion in cancer care; therefore, the hospital has a baseline knowledge for enhancing its own services and resources for patients.  I appreciate the leadership Hospital C has shown in research; now I would like to be a member of the Patient and Family Advisory Council so I can contribute to developing strategies that would advance the hospital’s leadership in modeling excellent practices for diversity, equity, and inclusion in cancer care. 

Patient advocacy is a means to apply education on healthcare and related systems into meaningful actions to enhance the health and quality of life for patients.  Hospital C and other research institutes across the world are rich with studies on medicine, therapies, technologies, and other resources that can improve the lives of patients.  As a patient advocate, I want to identify practical ways in which the gap between research and practice can be filled. For example, earlier I referenced the article on racial disparities in cancer care by Hospital C.  I would like to partner with staff and other patients to assess the current state of culturally competent care at the hospital and determine priorities for elevating its importance in interactions between patients and any staff they encounter—from the doctors to the nurses to the receptionists and anyone else who is part of this ecosystem.   

I will be an advocate for patient-and-family-centered care because unfortunately I am too familiar with cancer; therefore, I can offer perspectives from multiple lenses. Exactly three months after my 35th birthday, I was diagnosed with breast cancer.  My aunt died of breast cancer when I was a teenager.  My ex-partner’s mother died of breast cancer when I was a twentysomething. I am aware of how almost each decade of my life, cancer keeps finding me. I comprehend what it is like to lose a family member to cancer. I especially know what it is like for cancer to be this huge secret that everybody knows, but cannot say aloud—as was the case with my aunt’s diagnosis.  I understand how familial and cultural dynamics impact healthcare.  I comprehend what it is like to have a partner struggle through graduate school as he copes with his mother’s death. I bring a breadth and depth of multicultural knowledge, stories, and experiences as a patient advocate.

Diversity and inclusion have mattered to me even before I knew those terms existed.  I grew up in Chicago and attended a school that was racially, ethnically, socioeconomically, and culturally diverse—but not always inclusive.  Then I moved to Park Ridge, a suburb of Chicago that was nowhere near as diverse and inclusive as my neighborhood and school were in Chicago. The sharp contrast between Chicago and Park Ridge made me realize that I thrived more in environments with diversity and inclusion.  When I had to choose between two colleges, I chose the University of Illinois at Urbana-Champaign partially because it was more racially diverse than the other school I was considering.  The same held true for graduate school.  When I was trying to choose among five graduate programs, I chose Harvard Graduate School of Education partially because it felt the most inclusive in my campus visits.  When I think of environments where I flourish most, I tend to be my most authentic self in places where supervisors, mentors, sponsors, and peers offer distinct, nuanced perspectives on complex social justice issues. As an educator, I approach my work with students through a framework of diversity, equity, inclusion, and justice because that framework enables me to support them holistically.  I believe in holistic support not only in education, but also in healthcare.  It feels natural to join the council given my lifelong dedication to holistic support systems, diversity, and inclusion. 

I am able to commit to the council to the extent that there are opportunities and projects available. I welcome the opportunity to discuss joining the council to advance excellence, diversity, equity, and inclusion in healthcare at Hospital C.

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