As a lay patient and AMR survivor working on various research projects and advisory panels, one thing I hear repeatedly is that “antimicrobial resistance is a scientific term which is too complicated for patients to understand.” Ironically, it’s precisely this thinking that led my healthcare providers not to attempt to explain AMR to me during my own journey of surviving a multidrug-resistant infection that nearly demolished my face and life.

Following my accident, I had an entire healthcare team looking after me. And yet no one – not the doctors, nurses, pharmacist, not even the pharmaceutical packaging on my medication – mentioned the words “antibiotic resistance” or suggested that we should take a test to see why the antibiotics were not working.

The first time I heard the term antibiotic resistance was a year into my recovery. After numerous infections and surgeries, I finally contacted the pathologists to ask for my test results and to try to understand what was going wrong. Up until then, I had felt utterly powerless, waking up every morning to an infection eating away at the tissue on my face and not having a clue that things like taking my antibiotic at a specific time at equal intervals could have potentially made a difference. I was oblivious to the role of stringent infection control both in the home and at the hospital, and so were my family, who also played a role as caregivers. I was left at the mercy of a healthcare system that had essentially stripped me of my rights. I wanted to be a team player, participating in my recovery. But I never got the chance.

Of course, one story like mine is not enough to generalise the whole world’s patient population. Nevertheless, I believe it is imperative to investigate all patients needs more extensively by creating meaningful channels for them to share their views, which is one issue I have advocated for these past few years. I passionately believe that in order to design meaningful solutions, we need to listen to everyone involved in the patient’s care, including the patient themselves. My son and I recently moved from South Africa to the UK and I find myself interested in comparing our two medical cultures. Is it any different here? Or are these communication gaps also prevalent? One thing that has already sparked my excitement in the UK, is the abundance of Patient and Public Involvement and Engagement (PPIE) programs, which I haven’t seen extensively in the AMR field before.

Talking to patients about the risks of AMR and increasing their access to reputable information in a form they can relate to is critical, be that through traditional or digital media channels like the internet or improving conversations between doctor and patient. Patients should have safe, inclusive places to share their stories without judgement. They should be valued for the experience they bring to the table. Above all, they should be empowered through education.

No patient should be as oblivious to AMR as I was. If you believe I cannot, I never will. If you do not teach me, I will never learn. If you do not involve me, I can never participate. As time goes by, I hope to see more meaningful progress on working with patients and civil society partners so they can rightfully be part of the AMR conversation. It is only in this way, working together, that we will ever make a real difference in the global fight against AMR.

Vanessa is the founder of Healthcare Communications and Social Media South Africa (hcsmSA) as well as an international patient advocate for AMR. Her journey with a multi-drug resistant MRSA infection was experienced in South Africa after a severe car accident. She advises various organisations including the South African Antibiotic Stewardship Program (SAASP) and Antibiotic use across Surgical Pathways Research Collaborative (ASPIRES). She is also a civil society champion at the Africa CDC and won both the FINDdx’s Voices for Diagnosis Award and Antibiotic Guardian Community Communications Award in 2020. Further she was a Stanford University Medicine X e-Patient Scholar in 2017 and was part of the first WHO Infodemic Managers Training Cohort.