Elevating Patient and Public Voices in AMR
AMR is a highly complex topic that has struggled to secure sufficient interest and participation from the public and patients. If we want to be successful in reducing the spread of AMR in our communities, we need to better understand how AMR is affecting people around us.
Storytelling, advocacy, and involvement of patients and the public are all necessary components of our work.
CIDRAP-ASP has partnered with The AMR Narrative to promote AMR advocacy, increase awareness, and develop a community of AMR champions and survivors.
We aim to equip patients and the public with the necessary knowledge to help them better understand AMR and issues related to it. Our goal is to promote and boost advocacy capacity to create a critical mass of people sustaining action for change.
Throughout 2023, we will host a series of events in collaboration with The AMR Narrative to encourage meaningful conversations around AMR among healthcare professionals, patients and the public.
For more information regarding upcoming events, check the dedicated 'Events' page on The AMR Narrative website.
Rare Diseases Day & AMR
- Moderator: Francesca Chiara (@CIDRAP) & Vanessa Carter (@theAMRnarrative)
- Date: 28 February 2023
- Time: 4pm - 5pm UTC
- Hashtag: #theAMRnarrative
Individuals with underlying diseases are more susceptible to developing dangerous and potentially life-threatening AMR infections.
For instance, patients with cystic fibrosis are prone to developing chronic upper respiratory tract infections because of the thick mucus that is secreted in the lungs as part of the disease process. Bacteria, including those that are drug-resistant, are more likely to become trapped within this mucus, causing an infection that could be difficult to treat with currently available medicines. Read our patients’ stories here.
Additional rare diseases that can be impacted by AMR include Osteomyelitis, Microatia, Thymic Carcinoma and Actinomycosis as well as conditions like craniofacial anomalies, which rely on continuous surgical interventions where antibiotics are prescribed to reduce and manage infections.
Various interventions including Antimicrobial Stewardship, education and infection control (e.g. hand hygiene) as well as novel treatments like phage therapy are being utilised to tackle AMR. The WHO describes “Antimicrobial stewardship” as interventions designed to promote the optimal use of antibiotic agents, including drug choice, dosing, route, and duration of administration. It would be important to understand how these can improve patient outcomes in the rare disease community.
Join us for a 60-minute Twitter chat to share your views about the impact of antimicrobial resistance and rare diseases. The chat is primarily for patients, carers, charities, members of the public and related stakeholders, but we welcome everyone's views.
T1: What is AMR and why could it be a problem for patients affected by rare diseases?
T2: Why are rare disease patients so badly affected by AMR infections?
T3: How might we reduce the incidence of infection or improve treatment options for rare disease patients in relation to AMR?
T4: What is antimicrobial stewardship and how can it support patients with rare diseases?
T5: What interventions do you think could reduce the risk of AMR in clinical settings (e.g. hospitals) for rare disease patients?
CT: Any thoughts you would like to add about the impact of AMR and rare diseases?
How to participate:
Join us for a 60-minute Twitter chat with our panel experts. All stakeholders are welcome.
Start your answers with T1, T2, T3, T4, T5 or CT for transcript purposes.
Answer only after the moderator prompts. Questions will be prompted every 10 minutes but keep answers coming using the relevant T and number. Both panel experts and the public are encouraged to answer.
Use the #theAMRnarrative hashtag in all your tweets so that you are visible to others in the chat and captured on transcript.
Notes: Prior to the event, review the University of Minnesota's Social Media House Rules for a code of conduct applicable to this event.