RESPONSIBILITY

Building a Path to Greater Health Equity Through Storytelling

Putting a human face on what can seem like overwhelming societal challenges can create empathy and inspire action. That’s the premise behind the Amgen and StoryCorps’ collaboration — Every Patient Counts. Every Story Matters: Health Equity Series.

This week, Amgen and StoryCorps are releasing the first 10 audio stories in this series, which is designed to illuminate the shared experiences of individuals either facing health disparities or working to change them in cardiovascular disease, asthma and cancer.

We recently sat down with Murphy Barney, StoryCorps’ program lead for this partnership, to gain perspective on the value of this collaboration, what can be learned from hearing these stories and what she hopes others will take away from them.

Why is intentional storytelling important for a topic like health equity?

Improving health equity requires changing systems that have a long history of inequitable care and services in the communities they are responsible to serve. With this innately human process of storytelling, we can get a clearer picture of where and how we can support communities as they pursue health. By talking with communities, not to them, we can learn more about how to make meaningful changes.

Additionally, we’re living in a moment with many advances in healthcare. If we can’t tell a compelling story or hear from communities about what they want and need from our health systems, we can’t implement these advances to create a healthier world.

Most of the stories are from conversations between two people who know each other. What makes this approach powerful?

Storytelling is a trust-building exercise. Many communities and individuals don’t feel trusting of the systems that are in place, and there are power dynamics in conversations that happen in that context.

StoryCorps’ main priority is to listen, honor, share. When people are able to talk to someone who is on their healthcare journey with them—a provider who took time to listen, or a family member, caregiver or friend they met along the way—they are able to talk openly. The most authentic stories come forth the less you try to guide them, and in turn, we are better able to learn the lessons we’re setting out to learn.

What lessons can be learned from these stories? Are there common themes?

I’ve heard many stories in my career where people talk about one healthcare provider, or a group of providers, that took the time to listen. Providers are under immense pressures and time constraints, but again and again, and in this series as well, we hear stories of people whose lives were transformed by providers who listened, who saw them, and in whom they saw a part of themselves. They felt that provider was their advocate and their educator.

I can pinpoint what we hear far too much in women, specifically women of color, particularly Black women, that they are undertreated, underdiagnosed, and many times silenced.
— Dr. Rachel Bond, cardiologist

Additionally, there are many interconnected systems that can affect health. If a community is facing inequitable health outcomes, it's a sign that the systems meant to be supporting them aren't functioning, including education, food access and social support. By learning from patients, we can respond to expressed needs. We can co-create solutions to address the barriers and challenges they are experiencing within that system based on the innovations and opportunities they see as possible.

It's important to meet people where they are. To gain trust, you have to work with community partners that have the trust of the community.
— Stephanie Rivera, CEO, Lazarex Foundation

Was there anything surprising or particularly striking in these stories?

Listening to these stories is a reminder of how generous human beings are. Those who’ve experienced marginalization in the health system don’t want that experience for others. When people have the bravery to share, and we take time to listen, change starts to feel possible.

The stories also take the abstract concept of health equity and introduce an urgency. We know health inequities are a problem and health systems are difficult to navigate. When you hear about it from an individual perspective, it engenders a sense of great responsibility.

Be the change you want to see in this world and stand up and do something and stop expecting others to give you a seat at the table. Build a table.
— Tara Robinson, founder, Black Heart Association

What do you hope people will take away from listening?

I hope people are reminded of our shared humanity, that the change we're looking for is possible and every community is their own expert in their own health needs. The health of our communities impacts and informs our path to a more equitable world beyond health itself. I hope when people listen, they realize what inequity looks, sounds and feels like and that through storytelling, we can create a path to a more equitable and healthier world. It's a grand vision, but it might as well be.

Amgen is working with or supporting more than 70 organizations through cross-sector collaborations, public-private partnerships and advocacy relations programs. Visit this page to learn more: Amgen Patient Advocacy and Strategic Alliances.

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