Putting patients at the centre of antimicrobial stewardship in Uganda: Why meaningful patient engagement is essential to beating antimicrobial resistance

Summary

“When the medicine no longer works, the patient suffers twice: first from the illness, then from the cost, fear, and uncertainty that follows.”

Across Uganda, patients are increasingly experiencing infections that no longer respond to commonly used antibiotics. Conditions that were once easily treatable now require longer hospital stays, repeated courses of treatment and higher out-of-pocket expenditure. These lived experiences reflect the human impact of antimicrobial resistance (AMR), a growing threat to patient safety, equity and health system resilience.[1]

Although antimicrobial stewardship (AMS) has traditionally focused on prescribers, laboratories and health facilities, evidence from Uganda demonstrates a critical reality: a large proportion of antibiotic use occurs at community and household level.[2] Without engaging patients and communities as partners, stewardship efforts remain incomplete and unsustainable.

Annet Naguudi, Regina Kamoga and Joshua Wamboga from the Uganda Alliance of Patients’ Organizations (UAPO) argue that strengthening AMS in Uganda requires placing patients at the centre of the response and highlights the strategic positioning of the UAPO to lead this shift in line with national and global priorities.

Content

The AMR challenge in Uganda: More than a technical problem

Uganda is experiencing increasing resistance to widely used antibiotics, including amoxicillin, ciprofloxacin, ceftriaxone, gentamicin and cotrimoxazole.[2][3] Surveillance and hospital-based studies show a rising prevalence of multidrug-resistant organisms, particularly extended-spectrum β-lactamase (ESBL)–producing Enterobacterales and methicillin-resistant Staphylococcus aureus (MRSA).[2] 

Drug resistance has also been documented across priority disease programmes. Uganda’s first national tuberculosis (TB) drug-resistance survey reported resistance to any first-line anti-TB drug in 10.3% of new patients and 25.9% of previously treated patients, with multidrug-resistant TB reaching 12.1% among the latter group.[4] In malaria, resistance to chloroquine and later sulfadoxine-pyrimethamine emerged in the 1990s and early 2000s, prompting successive changes in national treatment policy toward artemisinin-based combination therapies.[5] HIV drug resistance has similarly increased over time, particularly to non-nucleoside reverse transcriptase inhibitors, contributing to Uganda’s transition to dolutegravir-based first-line regimens with a higher barrier to resistance.[6][7] 

Together, these trends highlight AMR as a cross-cutting threat requiring coordinated AMS across human health programmes.

For patients, AMR translates into:

• Delayed recovery and treatment failure.
• Prolonged hospital admissions.
• Increased healthcare and household costs.
• Reduced trust in health services.

These outcomes are not driven by clinical factors alone. Patient behaviour and community norms, including self-medication, incomplete adherence to treatment, pressure on clinicians to prescribe antibiotics and sharing of medicines within households, are major contributors to inappropriate antimicrobial use in Uganda.[1][8] Addressing this is therefore essential to effective AMS.

Strong policy commitment, persistent implementation gaps

Uganda has demonstrated strong political commitment to addressing AMR through the National Action Plan on Antimicrobial Resistance II (NAP-AMR II) 2024/25– 2028/29, which aligns with the WHO Global Action Plan on AMR and adopts a One Health approach spanning human, animal and environmental health.[1][8] Key achievements include:

• Establishment of a national AMR Secretariat.
• Adoption of the WHO Access, Watch, and Reserve (AWaRe) antibiotic classification.
• Piloting of AMS committees in selected regional referral hospitals.
• Annual national AMR awareness campaigns.

However, despite these advances, AMS implementation remains uneven. Stewardship activities are largely concentrated in tertiary facilities, diagnostic capacity is limited in many settings, and surveillance systems do not adequately capture community-level antimicrobial use.[8] Critically, patient engagement is not yet systematically embedded within AMS implementation, limiting the reach and sustainability of national efforts.

Why patient engagement is central to AMS

AMS is most effective when patients are not passive recipients of instructions but active partners in care. Patients influence antimicrobial use at every stage: care-seeking behaviour, expectations during clinical encounters, adherence to prescribed treatment and medicine use within households.[1] Meaningful patient-centred AMS ensures that patients are:

• Informed, with clear and accessible information about when antibiotics are needed.
• Empowered, able to ask questions and participate in shared decision-making.
• Engaged, involved in shaping stewardship messages and interventions.
• Partners in accountability, reinforcing appropriate use within families and communities.

Evidence increasingly shows that stewardship interventions incorporating patient education and community engagement achieve more durable behaviour change than provider-only approaches.[9]

The strategic role of patient organisations

Patient organisations occupy a unique position within health systems. Rooted in lived experience and trusted by communities, they can translate complex technical guidance into culturally relevant messages, strengthen trust and support accountability for quality and safety.

UAPO is a national umbrella body representing 18 patient organisations across diverse disease areas. UAPO provides a unified, patient-centred platform that aligns closely with Uganda’s AMR priorities, particularly in:

• Rational medicine use.
• Community awareness and behaviour change.
• Patient safety and quality of care.
• Accountability and transparency in health systems.

UAPO does not replace government leadership or clinical stewardship. Rather, it complements national and facility-based AMS efforts by anchoring stewardship in lived experience and community practice, consistent with WHO guidance on meaningful patient engagement.[10]

Demonstrated patient-led innovation: The CHAIN experience

A compelling example of patient-centred AMS in practice is provided by Community Health and Information Network (CHAIN), a UAPO member organisation. CHAIN has developed an innovative gamification-based approach to antimicrobial stewardship education that targets children as agents of change. Through interactive play, storytelling and peer learning, children are taught:

• When antibiotics are needed—and when they are not.
• The importance of correct dosing and completing treatment.
• Hand hygiene and infection prevention.
• The risks of sharing or misusing medicines.

To date, this approach has reached over 20,000 children in rural and urban communities and has demonstrated measurable improvements in hygiene and medicine safety behaviours (UAPO internal programme data). Children trained through the programme act as AMR champions, influencing parents and caregivers and reinforcing responsible antimicrobial use at household and community levels. This early-life intervention addresses AMR at its behavioural roots and complements facility-based stewardship and regulatory interventions.[8]

UAPO’s positioning to lead a national patient-centred AMS campaign

UAPO is uniquely positioned to lead a national campaign on strengthening AMS through patient engagement by offering:

• National convening power to bring together patients, clinicians, policymakers, regulators, and partners.
• Trusted community reach through established patient networks.
• Strong alignment with national policy, particularly NAP-AMR II.
• Scalable community-based models that complement technical AMS interventions.
• A sustainability focus, embedding stewardship behaviours early and across generations.

Through this role, UAPO can help ensure that AMS is not only implemented, but understood, owned and sustained by the communities it serves, reinforcing national AMR objectives.[8]

Conclusion: From policy to people

Uganda has laid strong foundations for addressing antimicrobial resistance through robust policies and multi-sectoral coordination. However, the next phase of progress depends on translating policy and technical guidance into everyday decisions made by patients and families.

Strengthening antimicrobial stewardship without engaging patients risks short-lived gains. By placing patients at the centre of AMS and by supporting patient organisations, such as UAPO as partners and conveners, Uganda has an opportunity to demonstrate how meaningful patient engagement can accelerate stewardship, protect life-saving medicines and strengthen health system resilience.

Investing in patient-centred AMS is not optional; it is essential.

References

1. World Health Organization. Global action plan on antimicrobial resistance, 2015.
2. Okiror JJ, Aruhomukama D, Kajumbula H. Kateete DP. Trends in antimicrobial resistance from sentinel surveillance sites in Uganda. BMC Infectious Diseases 2024; 24: Article 912.
3. Ndugga P, Mboowa G, Karamagi C, Taremwa IM. Antimicrobial resistance patterns among priority bacterial pathogens in Uganda. BMC Infectious Diseases 2024; 24: Article 930. https://doi.org/10.1186/s12879-024- 09806-y.
4. Lukoye D, Adatu F, Musisi K, et al. Anti-tuberculosis drug resistance among new and previously treated sputum smear-positive tuberculosis patients in Uganda: Results of the first national survey. PLoS ONE, 2023; 8(8): e70763. https://doi.org/10.1371/journal.pone.0070763.
5. Kamya MR, Bakyaita NN, Talisuna AO, et al. Increasing antimalarial drug resistance in Uganda and revision of treatment guidelines. The Lancet 2002; 360(9341): 451–2. https://doi.org/10.1016/S0140-6736(02)09609-7.
6. WHO. HIV drug resistance report 2019. World Health Organization, 2019.
7. Wittkop L, Günthard HF, de Wolf F, et al, WHO HIVResNet. Effect of transmitted drug resistance on virological and immunological response to initial combination antiretroviral therapy for HIV. The Lancet HIV 2021; 8(3): e167–e77. https://doi.org/10.1016/S2352-3018(20)30338-7.
8. Ministry of Health (MoH), Republic of Uganda. National Action Plan on Antimicrobial Resistance II (2024/25–2028/29). Government of Uganda, 2025.
9. WHO. Antimicrobial stewardship programmes in health-care facilities in low- and middle-income countries: A WHO practical toolkit. World Health Organization, 2019.
10. WHO. Framework on integrated, people-centred health services. World Health Organization, 2016.

Further reading on the hub:

• Why won’t my doctor give me antibiotics? Ron Daniels explains
• My involvement with the Commonwealth Partnerships for Antimicrobial Stewardship Scheme (CwPAMS) in Zambia
• Top picks: Key resources on antimicrobial resistance

Do you have insights to share around patient safety? We would love to hear from other countries and organisations on the work they are doing. Are you a member of the hub? Why not join our global community today (it’s free and easy to sign up) and submit an article or share a resource? You can also contact the editorial team at [email protected].

About the Author

Founded in 2011 by 10 patient’s NGOs, UAPO is a registered non-profit organisation. UAPO is a unique civil society network leading the way to a Uganda free from preventable suffering, disability and death caused by poverty related and neglected diseases. It is dedicated to improving health outcomes and ensuring that patient safety and perspectives are integrated into health policies and practices.