Everyone loves to watch TED Talks and listen to podcasts. Why? It’s because what every TED Talk speaker and podcast host has in common is that they’re relatable, authentic, and engaging storytellers. Nearly every TED talk begins with a story. While robust data is compelling, the reality is that what elicits a feeling of connectedness, gets your audience to hang onto every word, and encourages your audience to think differently is real, raw narrative.
This is particularly true in public health and healthcare at large. As we continue to fight the disproportionate outcomes of the COVID-19 pandemic, center public health on equity, and enter this next decade of digital health, transforming the delivery of healthcare hinges on the development of a public health leadership that listens to patients’ stories and elevates the voices of those who may otherwise go unheard.
We must bring compassion and empathy back into public health and use the lived experiences of our most affected populations to drive healthcare decision-making.
The concept of storytelling in healthcare dates back to William Carlos Williams, a physician-writer with a propensity to capture the diversity of the human illness experience through poetry and prose. Through Williams’ work we see the importance of observation and listening to patients’ describe illness to inform the diagnosis and dictate their care plan. Every patient hails from a different walk of life in which they experienced unique barriers to access basic needs like fresh food, stable housing, and medical care. From Williams, I learned that harnessing the power of a narrative changes the way we care for those in need.
As we enter the next decade of healthcare focused on digital health solutions, preliminary studies show promising findings on how digital storytelling is a method to translate knowledge and start a dialogue on community health issues with patients, caregivers, healthcare professionals, and policy makers. So as healthcare leaders and healthcare organization managers shift full speed into developing the best healthcare monitoring apps, data management systems, let’s always remember to lean on the basics: stories.
Transform the Delivery of Healthcare
Let me begin with a story: As an administrative intern at UCLA Health in the Department of Oncology & Cellular Therapies in 2021, I facilitated focus groups with oncology care teams and created space for cancer survivors and thrivers to share their patient experience. From this opportunity to listen to others, I learned that there needed to be standardization of care with regards to conversations on reproductive health. Young adults and teens faced with a life-changing cancer diagnosis suddenly found themselves grappling with family planning and other seemingly futuristic concerns. Conversely, most oncologists move full speed ahead into the treatment plan without a dialogue on fertility care because their priority is early intervention.
Through this experience, I learned that storytelling is a method to drive healthcare innovation in order to improve health outcomes, but more importantly as a way to give a voice to those accessing the public health system. I’m a strong believer that patients and communities know precisely what’s missing from their healthcare experience. Many health systems and hospitals champion the so-called “patient-centered model of care.” To achieve this, it’s crucial for C-suite leaders to utilize the inputs and experiences of patient and caregiver advisory councils. Similarly, public health organizations employ a “population health approach.” From a management standpoint, a population health approach requires partnerships with community-based organizations, church leaders, local business owners, and grocery store managers—those that engage with the community.
Humanism in Healthcare
Since my first semester at Mailman, I worked with a community of pregnant women in the Washington Heights area that lacked access to continuous care from the prenatal period to the postpartum period through the Practical Resources for Effective postpartum Parenting (PREPP) program led by Dr. Catherine Monk. Many of these resilient women faced socio-economic barriers daily, and as volunteers, we helped them access parenting resources, virtual sessions with a psychologist, social worker or psychiatrists to support them through their pregnancy. Many women shared their personal challenges, vulnerabilities and barriers to access support services. Many patients and expecting mothers also demonstrated a desire to learn more about the process of childbirth. In response to this identified need, Columbia University Irving Medical Center’s Department of OB/GYN piloted the Childbirth Education Program. Through three doula-led sessions, English and Spanish-Speaking pregnant women became empowered with the knowledge necessary to navigate childbirth and the postpartum period for free. These vulnerable and personal stories drive management decisions like the one we see with the Columbia OB/GYN department more than just facts and statistics about maternal mortality and morbidity because stories illustrate complex social issues. These patient experiences allow us to teach healthcare professionals about the needs of our most vulnerable populations and utilize narratives to promote better community health outcomes. Which is what we need now more than ever before.
Currently, there exists great apprehension between communities of color and the public health community—driven by a cyclical pattern of distrust dating back to the infamous Tuskegee Study that denied 200 Black study participants treatment for Syphilis.
It is the responsibility of every public health leader to build care models that keep human stories at the center of every decision, program intervention, and policy implementation. It’s imperative that every public health leader invests time and resources into making space at the table for community members to be involved in the design of policies, practices, and how healthcare is delivered.
Narratives preserve human histories and identities. When patients’ share stories, they offer insight into their personal experiences as patients within an imperfect public health system. Stories unify patients, public health practitioners, and healthcare providers because every one of us entering the field of public health understands what it’s like to be a patient accessing a complex health system. For example, when a provider knows about their patient’s family members and what really makes them tick, they’re able to treat the individual, not just their ailments. When a public health advocate is able to center their fight for equitable access to health on the stories of community members struggling to receive timely care, that reflects the core mission of public health: to empower communities that face disproportionately disparate health outcomes to tell their story.
Patients’ stories reflect what they value in their healthcare experience and thus drive the basis of digital health solutions. Even more than statistics and quality metrics, we need data that tells us whether policies deliver to the needs of the affected populations. I bet the ROI on public health leaders that shape care delivery by listening to patients’ stories beats high technology healthcare interventions any day. As we aspire to make healthcare a human right, let’s reimagine what we traditionally learn to think of ROI and re-align the mission of public health on patients’ stories.
Varna Kodoth is a 2022 MPH candidate in the Department of Health Policy & Management. She received a Bachelor of Science in Cellular and Molecular Biology and English from the University of Michigan College of Literature, Science, and the Arts. Following graduation, she plans to attend medical school.