People Power: Using Citizen-Generated Data to Address Antimicrobial Resistance in Kenya

"AMR is a social issue driven by human behavior and should be tackled by engaging with communities to influence their behaviors. Empowering communities with knowledge in turn facilitates the co-development of actions to minimize the negative effects of AMR. CGD is a valuable approach, as it creates new spaces for citizens and government to engage and include citizens in public decision-making..."

Antimicrobial resistance (AMR) is a growing threat globally: Infections that are resistant to antibiotics could cause an estimated 10 million deaths each year by 2050. Yet there is a lack of data on AMR, with AMR surveillance often patchy, particularly in low- and middle-income countries (LMICs). Global action to tackle AMR is insufficient due not only to poor understanding of the drivers and impacts but also to relatively limited public engagement to raise awareness and change behaviours. To address these gaps, Africa's Voices Foundation (AVF) and the Global Partnership for Sustainable Development Data (GPSDD) collaborated on a project to generate and use citizen-generated data (CGD) to tackle AMR in Kenya. This report details the findings from ten weeks of citizen interaction (August 2020 to July 2021).

The study, funded by the Wellcome Trust, involved use of CGD collection methods across three counties in Kenya - Kiambu, Bungoma, and Kilifi - to empower communities, healthcare workers, researchers, and policymakers to generate and use data on AMR. Given COVID-19 restrictions on in-person gatherings and travel, interactive radio and SMS were a workaround to face-to-face meetings. Over ten weeks, the study hosted 38 interactive radio shows and generated more than 20,000 short messaging service (SMS, or text) messages from 5,000 people.  Specifically, data collection methods included:

• Working with local radio stations on the county level: Radio is the most-consumed media source in Kenya and is a powerful medium for influencing culture, beliefs, and values. For a complex topic like AMR, the use of radio was important to simplify the language and interact with a wide range of citizens. AVF and GPSDD ran 8 radio shows in each county for 2 months. Each radio show brought in an AMR expert to discuss issues on AMR pertinent to the county and facilitated conversations on how citizens can play a more active role. Each radio show was accompanied by a "question of the day", which allowed participants to respond to the question via SMS through a shortcode. (Most Kenyans also have access to a mobile phone and could therefore interact with the radio shows through free SMS.)
• Listening groups to increase citizen input on policy projects: For participants who were not able to listen to the show, AVF and GPSDD organised listening group discussions (LGDs) where about 10-15 participants listened to the radio show together and talked about the conversations on the radio show.
• SMS surveys for a wide span of data, to receive feedback from listeners: AVF and GPSDD asked the audience to respond to a question that was asked during the radio show using a free SMS short code.
• 16 interviews with key AMR informants at the county level to understand policy priorities and directions for strengthening AMR in the counties.

One lesson that emerged from these CGD methods is that translating medical concepts such as antimicrobials into local languages is a challenge. The programming of the radio shows required a specific approach to ensure the messaging in Kiswahili, Kikuyu, and Luhya was understood by listeners. For example, radio questions focused on "antibiotics" because it was easier for citizens to understand in their local languages than "antimicrobals". During the shows, guests highlighted specific bacterial infections and specific types or brands of antibiotics, such as amoxicillin, to ensure better understanding by audiences.

Chapter 3 of the report presents findings. For example:

• Participation led to an improvement in knowledge of AMR: At the start of the study, 89% of participants thought the community was not informed at all on AMR or informed only a little bit; by the end of the study, that percentage had dropped to 78% of participants. Women reported feeling more informed about AMR than men, and, over the duration of the radio shows, there was a positive increase in the perception by women of the levels of community awareness of AMR. Despite a general awareness of AMR and antibiotics in theory, the LGDs and key informant interviews showed that while respondents know that antibiotics should be taken according to a prescription, this knowledge does not translate into practice.
• Examples of drivers of AMR revealed through the CGD include: AMR and risky health-seeking behaviours (e.g., men are especially reluctant to seek medical care until they are very ill, when antibiotics are the only option); vague or absent guidance from healthcare workers that leads to misuse; weak enforcement and awareness of medication regulations; and lack of trust in health professionals, which results in citizens delaying seeking appropriate medical care. "Citizens feel that effective regulation, enforcement, and awareness are important in addressing AMR, but these solutions can only work if the health systems are functional as well."
• Respondents reported misuse of antibiotics on animals, largely due to a lack of knowledge: Understanding the role that animal health and the environment play in AMR (a One Health approach) is crucial in preventing infections and the further development and spread of AMR, according to AVF and GPSDD.
• Gendered dimensions of AMR deserve attention: For instance, in the counties studied, there were more female healthcare workers at the nursing level than fully qualified medical doctors. As nurses are the first line of contact with citizens at the facility level, they can play a critical part in the AMR conversation and can educate citizens.

The recommendations for action outlined in the report highlight that AMR is a shared responsibility - whether in a Kenyan context or applied globally - among the following:

• Citizens and communities:
  • Empower people to dispel inaccurate information on antimicrobials by sharing accurate information with others in the community so they can tackle AMR (e.g., by following prescriptions).
  • Proactively engage in efforts to gather CGD, which is a means to get the voices of citizens heard, hold the government accountable, and ensure that citizens' experiences are reflected in policy and decision-making.
• National and subnational government policymakers:
  • Make investment in AMR a public health priority - e.g., strengthen laboratory networks, equip health facilities with sufficient medication and healthcare workers, and make health services affordable.
  • Promote AMR stewardship by incorporating citizen engagement in AMR decision-making, policies, and budgets and by raising awareness of regulations to tackle AMR.
  • Embrace CGD - e.g., partner with civil society organisations to collect, analyse, and use CGD to inform programmes, monitor their effectiveness, and engage citizens.
• Healthcare workers:
  • Drive quality patient engagement on AMR to tackle misinformation and improve levels of trust with citizens, such as by providing regular health talks and relevant materials and signage on AMR.
  • Take a holistic approach in addressing AMR, which requires understanding the role of community engagement and drawing on lessons from CGD to inform interactions with patients and communities.
• The research community: Explore ways to incorporate citizens’ voices in research studies that address challenges on AMR, especially in hard-to-reach areas such as arid and semi-arid lands.

In conclusion: "CGD empowers community members by engaging them in one or several stages of the data value chain - collection, publication, uptake, and impact. It offers an important complement to official data produced by national statistical offices in driving forward a data revolution for sustainable development. Looking forward, the value of CGD can be further supported through national statistical offices providing stewardship to producers of CGD. Stakeholders in AMR can tap into CGD more deeply to help them understand and influence the knowledge, attitudes, and practices of citizens on AMR."

Click here for an interactive version of the report.