“Through storytelling, we share what it means to be human.” ― Jimmy Neil Smith 

While community engagement is always on agenda for the Camden Coalition, it has also been a subject of federal strategy in recent years. In 2024, we saw several new policy requirements for community engagement. While story sharing is only one of many pathways for partnering with people with lived experience, it’s among the most common approaches.

In fact, storytelling is everywhere in complex care. It’s in the field’s marketing materials, advocacy campaigns, quality reporting, and training. The Camden Coalition features story sharing at our annual conference. Stories give color to our work, provide us with windows into others’ experiences, help people understand and care about what we’re doing, and hopefully, make the case for the change that is needed in our health care system. But not all stories hit their mark. Rushed in our day-to-day, we can fall into patterns of story sharing that can disempower, oversimply complex issues, and even cause harm.

In 2024, a cross-departmental team at the Camden Coalition came together to work with expert storytelling consultant Kate Marple, to review and strengthen our organization’s approach to story sharing. In our first session with Kate, we broke up into small groups and were asked to each share a story about a time we felt well-supported. Many people shared vulnerable stories: a time they were very sick, what it was like to give birth, trying something new and scary. When we came back into the full group, we were invited to share back one of our teammates’ stories.

It wasn’t necessarily nerve-wracking sharing our own stories — our team is close-knit and trusting — but it was definitely nerve-wracking trying to tell someone else’s story back in front of them, and it was nerve-wracking listening to our own story being told by someone else. After the exercise, we debriefed. What was it like to hear our story shared? What was difficult about sharing someone else’s story in front of them? And what would we need to feel comfortable sharing a personal story publicly?

Having just assumed the role of storyteller, it was easy to answer this last question. Within minutes we compiled a long list of what we would want and need to feel comfortable sharing a personal story, including knowing the audience, the ability to review and edit the final version of the story, and access to support throughout the process. And while this list of requests seemed reasonable, many of the items were not consistently part of how our organization was working with people to share their stories or to share stories on their behalf.

Following this exercise, our group worked to craft a set of story-sharing values that reflected what we each felt we would want and need as we put ourselves in the shoes of the storyteller. The values we aligned on are:

1. Equity: Everyone has personal stories about health and healthcare, but people don’t have equal access to the microphone or policymakers. We draw attention to storytellers and experiences that are often pushed to the margins.
2. Autonomy: Everyone’s story is their own. We partner with people and communities to share their experiences in ways that feel authentic and empowering for them.
3. Safety: We prioritize the physical, emotional, and mental wellbeing of all people who share their experiences. We gather informed consent and use trauma-informed practices.
4. Parity: We value lived experience and compensate people for their expertise, time, and labor wherever possible.
5. Strengths-based: We share stories that go beyond a problem someone has experienced to show their strengths and who they are.

While having a set of values is nice, what really matters is whether and how these values are upheld through processes, policies, and practices.

For example, our value “autonomy” can be operationalized in many ways:

• By letting the person who contributes their story have final approval of the version shared publicly

• By discussing and supporting the person’s own goals for sharing their story, not just focusing on the organization’s purpose

• By creating a thorough consent process so people who share their stories can make an informed decision upfront about whether this specific story sharing opportunity is a good fit for them.

As a first (but significant) step in operationalizing our story-sharing values, our team — which included representatives from our community engagement, care management and clinical redesign, communications, training, development, and policy departments — decided to revamp our story-sharing consent process by creating a consent collection tool and discussion guide. More than just a form to be signed, this consent collection tool guides staff members through a thorough conversation with clients, community members, and people with lived experience who are considering sharing personal stories.

Our hope is that this new tool supports a consistent and thoughtful approach to story-sharing consent conversations across our organization as it acts as a bridge between our values and our process. We welcome other organizations interested in strengthening their own story sharing practices to use or adapt this tool. A next step for us is to create a similar tool to be used with staff and other professionals who are sharing stories about the work they do.

Stories are powerful. They can spark connection, build empathy, and inspire change. We can all think of a time when a story brought us to tears, changed the way we saw the world, or moved us to action. But the power and potential of stories are shaped by how they are told. For organizations sharing stories — for advocacy, fundraising, marketing, training, coalition building, or any other reason — the power and potential of the stories we share will always be shaped not only by our values, but by how those values have been intentionally woven into our story sharing process.