Inequity Driven Mistrust: Its Impacts to Infodemic Management and Health Response and What to Do About It

"Neglecting to address deep-rooted inequities can severely impede infodemic management and responses to health emergencies."



This paper investigates the ways in which inequity can contribute to mistrust in information among at-risk communities in humanitarian contexts as well as the impact of this mistrust on infodemic management and health emergencies. It also offers strategies to mitigate inequity-driven mistrust. Published as part of Internews' Rooted in Trust project (see Related Summaries, below), the paper is based on research focused on internally displaced person (IDP) camps in northern Iraq and indigenous communities in the Colombian and Brazilian Amazon, with particular relevance to the humanitarian sector, health emergencies, and vulnerable communities. Overall, the research argues that inequity is an important driver of mistrust in health information for at-risk communities and that a failure to acknowledge and mitigate the effects of deep-rooted inequities can seriously hinder the efficacy of infodemic management efforts and health emergency response.



As explained in the paper, the COVID-19 pandemic, along with other recent health crises, has highlighted the detrimental impact of misinformation and mistrust of health information on health systems. Studies have underscored the negative associations between mistrust and various aspects associated to a health response, including health outcomes, utilisation of preventive health services, willingness to receive care (including vaccination), mortality rates during an emergency, perceptions of risks, and overall acceptance of health measures. Research shows that understanding what drives mistrust in health information and what possible actions can mitigate or address the impact that this mistrust has on the effectiveness of health emergency response is critical. "Given the significant role that trust plays during a health response, it becomes paramount to take a deeper look at what the main drivers of trust in health information are during a health crisis."



The first section of the report looks at how inequity can drive mistrust in health information among the participating communities. The objective of the research was to identify historical and ongoing grievances amongst the participant communities and to understand how these factors interplay with the trust or mistrust they have in health-related information, with a particular but not exclusive focus on the COVID-19 pandemic. Interviewees were asked about the main inequities or injustices that communities experienced during the pandemic. Once these issues were identified, the questions aimed to determine how these factors influenced their trust in health-related information. The findings identified three major, non-mutually exclusive, drivers through which perceived inequities influenced trust in health-related information: (i) structural inequities and grievances; (ii) inequities during the health response; and (iii) inequities directly associated with the information response. These three drivers demonstrate that at-risk populations in low-income settings can experience inequalities at the national, regional, and global levels, which are often entrenched in postcolonial structures of knowledge production, unequal health systems, and/or disproportionate medical supply distribution.



The second section focuses on the inequities that exist within the health emergency response, separate from the information response, and that impact trust in information. These inequities pertain to perceived disparities during the design, implementation, and evaluation of a health emergency response, involving various actors beyond just the national health system. While the first section demonstrated that there are structural factors influencing trust in information, this section argues that there are factors within the health response that are not directly related to the information or communication aspect but still affect trust in information. Through analysis, the research identified three main potential impacts resulting from inequity-driven mistrust: (i) impacts on the way communities engage or disengage with official information; (ii) direct or indirect impacts on health outcomes and communities' relationship with health systems; and (iii) impacts on communities' engagement and relationship with humanitarian responses.



Finally, the report provides a series of recommendations on how best to address - or attempt to mitigate - the roots of inequity-driven mistrust. As the report explains, these recommendations also provide positive practices that are already in place in some of the case locations and contribute to promoting trust among actors and communities affected by crisis. The recommendations fall within three categories:



Recommendation 1. Responding to Structural Inequities - Here, the report looks at recommendations related to addressing historical marginalisation and gaps in access to quality services. For example, programmes should consider past and lived experiences and acknowledge how the past can have a very real impact on a community's relationship with public health and emergency interventions. Programmes should also ensure dialogue between Western and indigenous/traditional knowledge systems. In relation to addressing gaps in access to quality services, one of the recommendations suggests, for example, holding focus group discussions to identify how people feel about health services in the area and to discuss the limitations and options available to them so they can manage real expectations.



Recommendation 2: Responding to Inequity During Health Response Inequity - Recommendations here look at addressing tokenistic and non-participation and avoiding top-down approaches. For example, programmes should ensure that community structures are prioritised for response before outsourcing contracts or services to outsiders. They should also ensure continuous participation of communities in preparedness and response plans through, for example, social listening and rumour tracking efforts that can provide insights into a community's needs, concerns, and risks. Programmes should also be transparent about processes and intentions to maintain trust. Considering the processes of marginalisation and troubled histories that vulnerable groups often face, it is also important for humanitarian actors to be open and transparent about intentions, walking communities through every step of the way.



Recommendation 3: Responding to Inequity as Part of the Information Response - Recommendations here address access to information and the production and dissemination of information. They include building preparedness of the information ecosystem for health emergencies by, for example, formulating risk communication and community engagement (RCCE) strategies that incorporate all actors within the information ecosystem - e.g., media and journalists, civil society organisations (CSOs), community structures, local health workers, local health authorities, humanitarian actors, and other non-traditional information providers. Programmes should also provide contextualised, localised, and actionable information by, for example, supporting communities to lead the production of information products and formats that allow two-way communication (for example: interactive radio shows, online live drama shows with space for comments, community gatherings, etc.). With regard to the production of and dissemination of information, the recommendations stress the importance of pairing the dissemination of information with the availability of services/clear actions along the different stages of the emergency response - e.g., not creating expectations or building demand about a service or treatment that is not available or keeping silent about a service that is available.

Editor's note: On October 25 2023, the inaugural session of Internews' Rooted in Trust Research (RIT) Webinar Series focused on the above paper. Guest speakers included key partners involved in the research who shared their insights, illustrating how inequity-driven mistrust significantly influences their work. They also provided examples of best practices for mitigating, addressing, and acknowledging the impact of this critical driver of misinformation. Click here to watch the video (or view it below).



Click here for the Spanish version of this 46-page report in PDF format.