Stand and Deliver: Improving the Healthcare System through Patient Advocacy with Shiella Dowlatshahi
by Lisa Gable · 11 Sep 2023 · 8 min read
My Stand and Deliver series highlights women who lead through inspiration and aspiration. Today’s article is about the importance of being an informed and proactive consumer of medicine.
I chose to interview Shiella Dowlatshahi, a patient advocate and the brilliant author of Pack Your Own Healthcare Parachute: A Physician’s Death Through His Daughter’s Eyes. Her book sheds light on the myriad administrative and support challenges patients encounter while grappling with complex diseases. Moreover, it emphasizes the crucial role of families in uniting to give much-needed support throughout the patient’s care journey.
Shiella’s story struck a chord with me, as my family has faced the challenges of managing rare diseases. Like Shiella, we realized early on that taking ownership of the process was crucial, ensuring we became staunch advocates for patient-centered treatments and exploring all available options.
Today, she is leveraging her book, which was recently named the “Best Publication in the Patient Advocacy Field,” to help families create their healthcare checklists.
Please introduce yourself. Tell us a little bit about your career and what excites you about your current stage of life.
I have spent many years in healthcare, leading commercialization efforts of life-altering treatments and helping to educate and support patients and providers. I have also been an active patient advocate to my son, who was diagnosed with an autoimmune disease nearly eleven years ago. I joined the board of the New England Chapter, Crohn’s and Colitis Foundation, a decade ago to continue to advocate for patients like my son through fundraising to increase awareness, support patients, and find a cure. My father, an immigrant who came to this country to train as a physician, taught me important lessons, one of which was to be a lifelong learner. Inspired by him, I chose to continue my studies by enrolling in graduate school for pain research, education, and public policy. During my last semester, my father became very ill and was diagnosed with a rare, aggressive, incurable cancer. While I continued my studies, I became my father’s advocate, as I was immersed in a forced internship in cancer and hospital medicine for the next seven months. This experience led to my aspiration to write a book about my father as a physician-turned-patient and solidified my desire to continue to advocate for patients.
I am excited about my current path because I have the opportunity to use my personal and professional experiences and knowledge to help other families navigate the complex world of healthcare. It is empowering to be able to share my story and assist others in creating healthcare strategies that prioritize the needs of the patient.
Tell us about a major transition period in your life (major move, career move, family, unique opportunity) and what prompted the change.
A major transition period in my life was when my father, who was a physician, passed away. He spent his entire adult life helping patients, often without getting paid for his services earlier in his career. My father’s capacity for kindness and generosity seemed endless. His passing propelled me to think about helping others who were not as knowledgeable about the healthcare system. I realized that there was a lack of support and guidance for patients, especially those with complex diseases. In addition to being inspired to write a book, my father’s passing was the catalyst to my interest in pursuing board certification in patient advocacy in order to serve patients, particularly those without support systems or healthcare expertise.
What are the three top tips you have for a woman trying to assert her influence and ideas?
How do you help unleash leadership at all levels?
In order to unleash leadership at all levels, I believe it is important to create an environment that encourages and supports leadership development even for those in entry level positions. This can be done through mentorship programs, leadership training, and providing opportunities for individuals to take on leadership roles. By empowering individuals at all levels of an organization or community, you can unleash leadership potential and foster a culture of growth and innovation.
Tell our readers about a passion project of yours, why it’s unique or special, and what attracted you to it.
One of my passion projects is ensuring that patients are educated consumers of medicine. I believe that it is crucial for patients to be at the center of their healthcare journey and have a voice in the decision-making process. This passion project is special to me because it is about empowering patients and their families to take an active role in their healthcare and ensuring that their needs and preferences are prioritized.
Who inspires you today and why?
There are many individuals who inspire me today, but one person who stands out is Malala Yousafzai. Her courage and determination in advocating for girls’ education, despite facing adversity and violence, is incredibly inspiring. She is proof that one person’s voice and actions can make a difference and create positive change in the world. Like Malala, there have been many other women who have endangered their own lives (or died) trying to make a difference for women all over the world. Making the world a better place for women is an aspiration I hold near and dear to my heart.
What is a future aspiration?
My future aspiration is to continue making a meaningful impact as a patient advocate and author. I also hope to inspire younger, incoming physicians and providers to become more vocal advocates for themselves and create positive change in the healthcare system. Success to me is improving patients’ lives, one patient at a time.
It was the terminal diagnosis of her father, a physician, that motivated Shiella to write a book that combines her professional expertise in the healthcare industry with her journey as a patient advocate, mother, and daughter. This exceptional perspective drives her toward creating a more equitable healthcare system and lightening the burden of disease on those who endure it. What sets her apart is her commitment to sharing practical knowledge and invaluable insights gained from her lived experiences, making her contributions all the more impactful.
A quote from Shiella that resonates deeply with me is:
“Success to me is improving patients’ lives, one patient at a time.”
This simple yet profound statement encapsulates her dedication and commitment to positively impacting individual lives within the healthcare system.
In my recent article titled “It’s Time for Critical Thinking About Critical Health,” I explore the inherent biological limitations of life. While medical advancements have granted us extended lifespans, good health is not always guaranteed, and eventually, some of us may receive a difficult diagnosis.
Our life can change instantly after a diagnosis. Shiella’s father’s cancer journey highlights the challenges of living with cancer and the complexities of modern healthcare.
Despite medical advancements, managing complex conditions creates disruptions and stress for the patient and their family. Hospital discharges assume understanding, but patients often need more complete comprehension. The fact that a medical professional, like Shiella’s father, still had questions and challenges is concerning.
Steps include reimbursing nutrition counseling, embracing telehealth, sharing data, and prioritizing holistic care. Patient empowerment, individualized approaches, and patient-centered decision-making are essential for improving lives.
In her book, Shiella candidly exposes a sad truth—even those within the healthcare system can face its inefficiencies when confronted with life-altering illnesses like cancer. She highlights the lack of continuity, communication gaps among healthcare providers, and the scarcity of compassion and support when delivering terminal diagnoses. The healthcare system remains fundamentally flawed despite encountering hardworking and passionate individuals within it.
No matter how health-conscious we are, life inevitably presents us with an obstacle in our medical journey. At some point, we must be prepared to confront these choices and guide our families in prioritizing the quality of life versus pursuing life extension.
These decisions are crucial, and they are an essential part of the human experience. Order Shiella’s book to learn how you and your family can be prepared for those hard medical moments.