Digital storytelling: AMR is everyone’s problem so make everyone part of the solution

By Becky McCall, a medical journalist for 20 years, with a strong background linked to the power of story, gathering the personal stories of patients and the inspirational stories of medics.

“The infection is not responding to any of the antibiotics we’ve tried so far.  We need to discuss next steps,” said the doctor, after two and a half years of trying to treat a resistant bacterial infection (Burkholderia cepacia) that had become established within Luke’s lungs, already burdened with cystic fibrosis.

“We need to stop,” said Luke’s mother. “I’m losing my son. He isn’t coping with the intensive treatment. He needs to breathe … our family needs to breathe.”

Not only did the drug resistant infection threaten Luke’s lung function, but it also suffocated the mental and physical well-being of the immediate family, and as the months turned into years of extended hospital stays, the tentacles of antimicrobial resistance (AMR) reached into their social, work and school lives too.

The public perception of the threat of AMR is the subject of my PhD research that has evolved into a project called StoryBug. To both explore and communicate concepts of AMR and antibiotic use to the wider public, we have co-created 3-5 minute mini-films (digital stories) with people who have experiences of and around resistant infection and/or antibiotics. In this way, we provide unique and personal insights into the wide-ranging human impacts of AMR on real lives.

Like Luke, for many people with underlying disease, antibiotics aren’t a choice but a necessity. Patients undergoing chemotherapy who have weakened immune systems are similarly vulnerable, but so too are healthy people who might pick up a resistant infection while in hospital for routine surgery, or even after a minor injury that unpredictably wreaks havoc across their lives.

That antibiotics underpin so much of modern medicine is one fundamental concept that is central to StoryBug.

In meeting the ongoing challenge of AMR– in particular antibiotic therapy, and all the associated but often-forgotten effects on people’s ordinary lives, we need better public engagement in both understanding around the threat we all face from AMR, but also attitude and behaviour change around how we manage non-serious infections, and use of antibiotics. Conversations – fresh and insightful and featuring the human side of AMR – need to be had in the public domain but also at the point of care. Together, novel approaches to creating and sharing stories alongside other more conventional public health campaigning might just prime a public dialogue to reinvigorate public perceptions of the threat of AMR

With a job as a medical journalist, and often on my own with two primary school-aged children, I deemed doing doctoral studies as out of my reach until an opportunity that was too good to miss arose at University College London (UCL). The Medical Research Foundation started a multi-disciplinary, UK-wide programme to fund research into AMR from basic science to the humanities, and with supervision by Professors Laura Shallcross, MBE, and Andrew Hayward at the UCL Institute of Health Informatics, and drama professor, Michael Wilson, at the University of Loughborough, I was offered a fully funded opportunity to explore storytelling around AMR.

Now, StoryBug has created five digital stories covering personal experiences including a drug resistant infection that led to sepsis in 31-year-old Laila who has stage 4 bowel cancer; a hospital acquired methicillin-resistant Staphylococcus aureus (MRSA) infection in a student with a toe injury; a story of debilitating antibiotic side effects in a fit and healthy man after a ski accident who acquired a surgical site infection; a woman with a resistant urinary tract infection (UTI); and Luke the little boy with cystic fibrosis and Burkholderia cepacia.

Uniquely, digital storytelling involves a co-creative process between the storyteller and the facilitator where the participant is helped to write a script, record a voiceover, and use video editing software to craft and tell their story in the first person, often using their own mobile phone-sourced images.

In this way, digital storytelling brings the viewers closer to stories of personal impact on ordinary lives, beyond the medical, capturing the humanity and emotion. The process deliberately avoids drawing on professional filmmakers and editors who add additional layers of interpretation that chip away at authenticity.  As such, digital storytelling focuses on the storyteller’s version of events, and places their feelings front and centre. As a journalist, I know only too well how stories can transform as they pass through the conventional editorial processes of the media.

AMR is everyone’s problem – healthy or otherwise – and as such, everyone is invested in efforts to bring it under control and keep antibiotics working for those people who desperately need them.

Most public health campaigns are developed by experts in social marketing, but I propose that through storytelling, we invite the public to adopt active ownership of AMR and to create their own community-driven campaign through storytelling of their personal experiences. I envision stories becoming one small part of a much more extensive global and local effort to curb the growth of AMR.

Through helping to shape how people think about antibiotics, including the real threat of AMR in everyone’s lives, a well-told story connects and resonates across individuals and societies, time and space, on a fundamentally human level to help keep antibiotics working.

More information about StoryBug and links to view the stories can be found here

Photos below – sourced from www.storybug.org.uk

Fight to Breathe: how a drug resistant bug in cystic fibrosis outsmarted every antibiotic

False Peak: when antibiotic resistance is a bigger threat than advanced cancer

Hidden Embers: ‘It’s not just a UTI!’ The hidden cost of antibiotic resistant bladder infections