Sharing stories of lived experience with professionals

Sharing stories can happen in different settings, like being invited to speak with researchers or medical students.

By sharing with researchers and healthcare professionals, patients can highlight important aspects of their experience that these professionals may not otherwise know about. Learning individual stories can help these professionals identify areas for improvement in care or new research ideas. Sharing your story can also help you make sense of your experiences and gain meaning from them.

Patients may also share their experiences through local media outlets. Sharing stories about gaps in healthcare experiences is one way that patients start to advocate and to find others with similar experiences. Stories in the media often influence decision makers in ways that quantitative data do not.

Sometimes, the most effective advocacy can come in unusual formats. One recent example is a project from the UK where ethics researchers at the University of Brighton and Sussex Medical School partnered with people whose children have (or had) rare genetic disorders, to share their lived experience in creative ways. The parents worked with a poetry tutor, Dawn Gorman, to produce a collection of poems, with the aim of educating professionals in the genomics field what it was like to parent and care for children with a rare genetic condition. These poems provided a novel way to share lived experiences.

The finished collection, Helix of Love, was published in digital form here. Selected poems were displayed at several industry conferences, and hard copies were distributed to genomics professionals across the world.