Misinformation is a hot topic! Since the COVID-19 pandemic, public health officials, community health workers, policy makers and the general public have wondered how to best address misinformation. Although we have felt the impact of misinformation more acutely with COVID-19, the spread of misinformation has been around for centuries. One example that is often referenced is a James Gillray painting from 1802, which depicts people turning into cows after receiving the cowpox vaccine. Misinformation is a global issue with varying origins, causes and impacts. It is not isolated to one continent or one disease, and it is pervasive in areas beyond health, including in politics and religion. Misinformation can be spread through online platforms, shared verbally, through print, television, radio, or other means.
Misinformation is defined as the spread of information that is false. However, even this definition can be challenging to conceptualize sometimes as knowledge is always evolving. As a result, some definitions include the caveat that it is the spread of false information within the context of the best available scientific evidence at that time. Another concept that defines misinformation is that misinformation is spread unknowingly; e.g., the person spreading the information does not know that it is false, inaccurate, or misleading. The term misinformation is often used as a catch-all term but it is important to distinguish its difference from disinformation. Disinformation is the deliberate spread of false information with an intent to harm whether that is for political gain, financial gain, mischief or other. This intent can sometimes be challenging to identify.
The focus of this commentary is on misinformation in the broadest sense, irrespective of intent.
Examining the relationship between misinformation and NTDs
Everyone is exposed to misinformation! We may not even notice it. However, some people are more susceptible to believe or further share false information than others. Ecker et al. (2022) shares that susceptibility to misinformation is influenced by more than just the mere exposure to false information, but rather it is a combination of cognitive, social and affective factors. Susceptibility to misinformation can also be influenced by the social determinants of health. For example, lower literacy including health literacy and digital literacy, less access to reputable information sources and the social norms established in one’s community can all impact a person’s susceptibility to misinformation.
People affected by neglected tropical diseases are frequently living in marginalised economic and social circumstances where their health is affected by the intersection of multiple social determinants like access to health care or water and sanitation, gender, age, income status, education and others to increase their susceptibility to infection and disease. Included in these determinants is health and/or medical literacy which may increase an individuals’ susceptibility to misinformation about NTDs, their prevention and treatments. The WHO 2030 NTD roadmap highlights the social determinants of health and NTDs, but does not address misinformation and the role it may play in hindering control, elimination and eradication goals.
Misinformation can be a significant public health concern when it comes to NTDs. For example, misinformation can limit self-care practices for managing lymphatic filariasis and similar NTD-related disabilities, reduce uptake of prevention recommendations and can lead to stigmatizing labels for those suffering from the effects of NTDs. For example, in some countries, infection with an NTD is believed to be linked to wrongdoing such has trespassing, or spiritual activity such as witchcraft and curses. These beliefs regarding the ways in which an NTD is acquired and spreads can perpetuate stigma and decrease an individual’s access to care. As well, it may cause the individual to become isolated from their family and community, which only further perpetuates the cycle of poverty and the impact of the NTD on the individuals’ health and wellbeing.
Misinformation can negatively impact MDA uptake due to false information that tablets used in preventive chemotherapy lead to sterilisation or are part of government-led family planning. Misinformation can also impact beliefs around adverse events, perceptions around the tablets in general or the purpose for taking them. Therefore, even if we achieve the WHO NTD roadmap target to improve access to pharmaceutical treatments, we will be no further ahead in the fight to eliminate NTDs if people do not actually take the tablets. There are multiple factors that explain why someone does not take the tablets offered during MDA, including the role that misinformation plays. As researchers, program implementers and public health workers, we need to better identify ways to understand and address misinformation across the field of NTDs from MDA uptake, to morbidity management, and to training and supporting the NTD workforce.
Examples and tools to address misinformation
Due to technologies such as the internet and social media, misinformation can be created and shared at a rate that makes it impossible to debunk every piece of misinformation in existence. Therefore, the response to misinformation needs to focus on alternate strategies that help to minimize its impact or harm. There are a variety of tools and resources available to help address misinformation such as social listening, evidence gap mapping, gist messaging and the truth sandwich.
Below you can explore some different strategies that groups have used to address misinformation in their communities:
- The Republic of Madagascar used music and live performances to help deliver evidence-based health information to rural communities. click here
- Mercy Corps, in partnership with the Puerto Rico Public Health Trust, Ciencia en tus Manos, Ciencia Puerto Rico, and Internews used a community-based approach to develop a rumour tracker tool to help identify information gaps and address misinformation in a timely manor. click here
- Students from Boston University, in the United States competed in a “Hackathon” run by the Task Force for Global Health aimed to identify innovative ways to advance NTD programs. The students developed a label that could be placed on pill bottles during MDA to help communicate factual information about the drug and lymphatic filariasis. Click here
- This toolkit created by the Office of the U.S. Surgeon General discusses ways to address misinformation, with a focus on online content. Click here
- The guide developed by USAID’s Act to End NTDs | East and Act to End NTDs | West Programs discusses strategies to address rumours and misinformation prior to implementing a mass drug administration campaign. Click here
Conclusion
Misinformation presents a significant challenge to all areas of health care, including NTDs. More research is needed to understand the specific impact of NTD-focused misinformation on both community health and on an individual’s physical health, mental health, and social connections. We need integrate strategies that minimize the harms of misinformation in NTD programs to better support communities, and to help us reach the WHO 2030 NTD Roadmap targets. Eliminating NTDs is a complex challenge that requires support from all disciplines and perspectives.
Do you have an experience with misinformation in NTDs? How did you address it? Did it work? Please share your experiences with iCHORDS (info.ichords@gmail.com), so we can highlight successes and challenges.
References
Cha, M., Cha, C., Singh, K., Lima, G., Ahn, Y., Kulshrestha, J., & Varol, O. (2021). Prevalence of Misinformation and Factchecks on the COVID-19 Pandemic in 35 Countries: Observational infodemiology study. JMR Human Factors, 8(1). https://humanfactors.jmir.org/2021/1/e23279
Desmond, N., Solomon, A.W., Massae, P.A., Lema, N., Anemona, A., Foster, A., & Mabey, D.C.W. (2005). Trans R Soc Trop Med Hyg. 99(9), 656-663. https://pubmed.ncbi.nlm.nih.gov/15979657/
Ochola, EA., Karanja, D.M.S., & Elliot, S.J. (2021). The impact of neglected tropical diseases on health and wellbeing in sub-Saharan Africa: a case study of Kenya. PLos Neglected Tropical Diseases, 15(2). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7904142/
Ecker, U.K.H., Lewandowsky, S., Cook, J., Schmid, P., Fazio, L.K., Brashier, N., Kendeou, P., Vraga, E.K., & Amazeen, M.A. (2022). The psychological drivers of misinformation belief and its resistance to correction. Nature Reviews Psychology, 1, 13-29. https://www.nature.com/articles/s44159-021-00006-y
Krentel, A., Fischer, P.U., & Weil, G.J. (2013). A review of factors that influence individual compliance with mass drug administration for elimination of lymphatic filariasis. PLos Neglected Tropical Diseases. https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0002447
Kuper, H. (2021). Disability, mental health, stigma and discrimination and neglected tropical diseases. Trans R Soc Trop Med Hyg, 115(2). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7842108/#:~:text=Stigma%20is%20often%20an%20overriding,and%20are%20often%20considered%20unappealing.
Kusi, C., Steinmann, P., & Merten, S. (2020). The fight against lymphatic filariasis: perceptions of community drug distributors during mass drug administration in coastal Kenya. Infections Diseases of Poverty. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7050125/
van der Linden, S. (2022). Misinformation : susceptibility, spread, and interventions to immunize the public. Nature Medicine, 28, 460-467. https://www.nature.com/articles/s41591-022-01713-6
World Health Organization. Neglected tropical diseases: tackling stigmatization, discrimination and mental health through a person-centred approach. (2020, October 12). : https://www.who.int/news/item/12-10-2020-neglected-tropical-diseases-tackling-stigmatization-discrimination-and-mental-health-through-a-person-centred-approach
