What impact could advocacy and storytelling have on AMR?
Advocacy has always been a powerful tool to create change. One important facet of advocacy utilised to memorably illustrate complex challenges or improvements in healthcare, is storytelling.
Before we could read and write, we told stories. Storytelling is as ancient as humankind and from its earliest origins involved our cave-dwelling ancestors painting their narratives on surrounding rock formations and hieroglyphics in pyramids which historians are still examining today.
Stories help us improve other people’s understanding of our experiences and when used in areas like healthcare they can contribute towards developing more meaningful solutions that address issues like access to care, improved health outcomes, innovation, and patient safety.
Considering the complexity of Antimicrobial Resistance (AMR), advocacy and storytelling should extend across human health, animal health, food safety and the environment because it impacts them all, this is known as One Health. In other words, stories should be shared by patients, consumers, and members of the public who are equally impacted if these precious medicines no longer work.
Whilst common forms of storytelling can be seen as writing a novel or public speaking, the truth is that it can take on multiple other shapes, including:
- Art
- Poetry
- Music (e.g., singing and instrumentals)
- Dancing
- Chanting
- Drama (e.g., including puppet shows, stage productions, documentaries, or film)
- Exhibitions
- Online advocacy (e.g., on social media and the web)
- Photography
- Sharing an experience through a research article or study such as with a scientific co-author
- Media interviews (e.g., magazines or radio)
- Design thinking workshops (e.g., problem-solving for health systems or digital innovation hackathons)
The way we choose to tell our stories can also rely on multiple factors and barriers, including:
- Culture
- Language barriers
- Social norms, beliefs, or religion
- Disabilities including our physical or mental capabilities
- Individual talents and skills
- Health literacy
- Digital literacy and access
- Stigma as well as comfort levels when it comes to others reading and sharing a personal experience widely. In this case, often the storyteller remains anonymous or uses a pseudonym (i.e., fictitious name)
- Privacy concerns
- Cyberbullying concerns
Although many forms of advocacy like storytelling are voluntary and shared with the intent to help others in a similar situation, income considerations can also determine how patients and carers share their stories. Financial resources will impact an advocate’s ability to travel, take time off work, arrange childcare, or a carer that needs to travel with them.
Reaching the right audience can be equally challenging for those who are sharing their story which is why the idea behind participatory health events, such as the #PatientsIncluded movement established by Lucien Engelen at the REshape Center, Radboud University where patients and carers are invited to join are important. Medical conferences are often attended by key opinion leaders in the field which provides advocates with an opportunity to amplify their voices. Preferences and barriers to storytelling should however always be considered on an individual and ethical basis.
Storytelling can be a compelling tool for self-healing. It can also empower others in a similar situation by providing hope and a better understanding of their own experience. No matter which way you look at it, our narratives remodel the science around an intricate topic like AMR which can be very dense and complicated. Our stories make science accessible. Our stories make us human.
Vanessa Carter
Vanessa became an AMR patient advocate in 2013 after surviving a serious car accident and 10-year facial reconstruction that caused a highly-resistant MRSA infection. She is a patient advisor to several organisations including CIDRAP (USA) and the WHO Strategic Technical Advisory Group on AMR (STAG-AMR) as well as a civil society champion at the Africa CDC.
She has won awards for her advocacy and further completed an e-Patient Scholarship at Stanford University Medicine X in the USA. With a professional background in marketing, Vanessa has also lectured on various topics including effective communication and infodemic management in relation to AMR after completing training by the WHO in 2020. She has also advocated the importance of patient and public involvement and engagement. Originally from South Africa, she now resides in the UK and is also the founder of The AMR Narrative. Read more at www.vanessacarter.co.za