Why participatory approaches for AMR matters to people and patient-centered action
By Vanessa Carter, AMR Patient Survivor and One Health Advocate,
Executive Director of The AMR Narrative. | Reading time: 3 min
PUBLICATION DATE: DECEMBER 4, 2024
Antimicrobial Resistance (AMR) is a term that is not widely recognised by many people globally. What’s even more concerning is that those who are most affected by AMR—patients and their families—are often the ones who lack that awareness and rely on understanding its consequences.
I was one of those patients—one of the countless individuals impacted by this rapidly escalating health threat but didn’t know it existed.
At 25, in 2004, I was involved in a severe car accident in Johannesburg, South Africa, which left me with multiple life-threatening injuries, especially to my face. . After several facial reconstruction surgeries, I developed an antibiotic-resistant MRSA infection, leading to a prolonged battle with the infection and severe facial disfigurement. This experience introduced me to the concept of antibiotic resistance. and highlighted the lack of communication among doctors. I was frustrated because my doctors had been working in siloes and at no time was this discussion about antibiotic-resistance being raised to help me make more informed decisions.
In 2013, after fully recovering, I decided to speak out as a patient advocate.
Antimicrobial resistance (AMR) wasn't widely discussed until the first UN High-Level Meeting on AMR in 2016, which brought more attention to the issue. The WHO developed the first Global Action Plan on AMR in 2015. Research, including the 2022 GRAM report in the Lancet, highlighted AMR's impact, estimating it caused 1.27 million deaths in 2019 and contributed to 4.95 million deaths.
On September 26, 2024, the United Nations convened its second High-Level Meeting on Antimicrobial Resistance (AMR) at the General Assembly in New York to update the political declaration. I was honoured this time to attend, share my perspective as a patient in several side meetings, participate in a UNGA HLM panel discussion, and share my personal journey at the initial consultative multistakeholder meeting held in May. One of the most significant commitments highlighted in the revised political declaration was the importance of participatory approaches in addressing AMR.
By involving those most affected, these approaches foster trust, improve the relevance and effectiveness of interventions, and empower individuals to actively participate in their health care and prevention efforts, ultimately leading to more sustainable and impactful outcomes in combating AMR.
The World Health Organization (WHO) also published the People-Centered Framework for Antimicrobial Resistance (AMR) in 2022. Its goal is to make AMR interventions more effective by aligning them with real-world challenges faced by patients, caregivers, and healthcare providers, thus fostering better engagement, adherence to treatments, and sustainable practices for AMR.
To achieve the ambitious goal of patient- and people-centered care, we must incorporate the experiences of patients and communities through a participatory process.
While this recognition is an important step, action is still needed. We must explore various ways to include patients, survivors, carers and the public as well as establish realistic and tangible mechanisms to support their involvement, including funding, advocacy development, and inclusive processes. Given that patients may face challenges such as illness, disability, language barriers, financial constraints, or limited health literacy, it's essential to create accessible pathways for participation. This is especially crucial to recognise in low-and-middle-income countries (LMICs).
Additionally, we should collaborate with patient organisations and other community actors to better understand and address their needs, ensuring that outreach efforts are effective and inclusive.
Ultimately, fostering a truly participatory approach in the fight against AMR will not only improve policies and healthcare outcomes, but it will also give patients a sense of empowerment, ensuring that they are not passive recipients of care, but active participants in shaping their health futures and those of future generations.
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