Congratulations to Professor Conrad Keating, Adjunct Professor at UCD School of Medicine and Writer in Residence in the UCD Centre for Experimental Pathogen Host Research (CEPHR), who has written an important perspective piece published in The Lancet.
The piece, titled Improving trustworthiness in global health, forms part of the evolving CEPHR strategy and addresses the challenge of trust in the context of global health.
As Prof Keating states, ‘‘We need to tell the stories of global health in a way that captures the imagination of the public, policy makers, donors, community field workers, and scientists, and to do so in a way that is accessible, intelligible, useful, and easily assessed. Hopefully, these efforts will contribute to reducing the dangerous gap in trust that has been identified between countries, within countries, and within communities that threatens global health.’’
Read the full piece below:
Improving trustworthiness in global health
This is a dangerous time for global health, not least given widespread vaccine disinformation across social media, with the aim of undermining societal trust in life-saving vaccines. Compounding this spread of fake propaganda and its potential to contribute to avoidable deaths are ongoing pandemic threats. In June, 2024, No Time to Gamble: Leaders Must Unite to Prevent Pandemics, a report by Helen Clark and Ellen Johnson Sirleaf, former Co-Chairs of the influential Independent Panel for Pandemic Preparedness and Response, highlighted two alarming developments: the transmission of highly pathogenic influenza A(H5N1) into mammals and the emergence of the more virulent clade 1b variant of mpox virus in DR Congo. Since then WHO has, again, declared mpox a public health emergency of international concern. Importantly, Clark and Sirleaf’s report identified a problem that, alongside other actions to strengthen pandemic preparedness and response, needs to be addressed: “There is a dangerous gap in trust between countries, within countries, and within communities that will allow pathogens to sail through.”
Trust is of course a critical component of the doctor–patient relationship and a key element within the social bonds that bind communities and society together. However, trust is socially conditioned and therefore open to manipulation. In recent decades the spread of libertarian versions of populism in some parts of the world rests on, and has promoted, narrow views in which freedom of expression is seen as omnipotent. In the most egregious cases, combining exaggerated conceptions of freedom of expression with digital connectivity has encouraged the proliferation of fake news, misinformation, disinformation, and conspiracy theories. Collectively, these forces threaten the integrity of systems of government as well as trust in biomedical and climate science and global health programmes.
For some, the concept of trust can seem amorphous, having no meaning without a situation or context, while the nature of trust will vary in different settings. Almost always, levels of social trust related to a particular topic can be influenced by far broader conversations, preconceptions, and disagreements about globe-spanning issues, such as climate change, democracy, or capitalism. For example, Philip Downs, Technical Director for Neglected Tropical Diseases (NTDs) at the non-profit organisation Sightsavers, which promotes the control and elimination of NTDs that affect more than 1 billion people worldwide, told me in an interview that he believes that “any climate changes that favour disease transmission present an opportunity for some actors to erode community trust in health systems and expose NTD programmes to political manipulation and disinformation”. Moreover, the concerted disinformation strategy by some in the industrial sector and the political arena has contributed to eroding trust in science in many countries just at a time when it is most needed as changing infectious disease threats emerge across geographies.
The microbiologist Abhay Satoskar and his colleagues at Ohio State University have developed a vaccine for the disabling NTD leishmaniasis, a disease with an extraordinary evolutionary and geographical history. “When I started my work on leishmaniasis”, Satoskar recounted to me, “I thought there would be no way that leishmaniasis would be endemic in the US—but in 2020 the WHO designated the US as endemic for the disease. Gone are the days that leishmaniasis was ‘a third world’ problem. Sandflies do not need a passport.” Many investigators now believe that a decisive moment has been reached in the evolution of global health, with the increasing spread of vector-borne diseases such as dengue fever into both the wealthy and economically deprived areas of very large cities of the Global South, including São Paolo and Delhi. The response to these threats requires effective, equitable regional and global control efforts, adequately resourced health systems and personnel, and high levels of public trust in biomedical science and systems of government. Compounding this growing threat from infectious diseases are mounting geopolitical tensions and regional conflicts, especially in contested border areas of the world. Clearly over the coming decades there will be growing concern globally about the climate–health–politics–trust nexus, particularly if declining levels of social trust in politics, institutions, and experts continue to negatively impact health outcomes.
Understanding what conditions determine the cadence of this nexus is not straightforward. In science, myriad attempts have been made to understand the social factors that affect trust in the era of populist politicians, and particularly how this inflects the nature of scientific research and the narratives around it. Additionally, the way medical information is communicated to the public by health agencies and professionals is also important for trust-building. As Downs explained to me, on occasion public trust can suffer as a result of poorly communicated information surrounding, for instance, mass drug administration campaigns and inadequate monitoring: “even reports of minor side-effects of taking treatments (eg, dizziness, nausea, fainting, etc) can have a detrimental impact on the trust that communities place in national elimination campaigns over time. Often these adverse events can be attributable to operational errors (eg, distributors not trained on and subsequently not checking to see if someone has eaten something before taking the treatment). This is why it is so important to ensure there is capacity to monitor the quality and fidelity of interventions.”
But other factors also influence such public trust and this has been especially evident in relation to vaccination. In 2013 a report of the American Academy of Arts and Sciences (AAAS), Public Trust in Vaccines: Defining a Research Agenda, examined the causes for the diminished public trust in US immunisation programmes. The report recognised multiple factors that affect vaccine uptake, including inadequate access to health-care services and lack of insurance coverage, but also highlighted how diminished public trust in the recommended childhood vaccine schedule was a result of an increase in parental concern about vaccines brought about partly by fraudulent scientific studies and irresponsible reporting alongside parents’ knowledge, attitudes, and beliefs about vaccines. It underlined the importance of developing evidence-based actions and communication strategies developed “in consultation with those whom they are committed to protect”. Additionally, the report asked a prophetic question that should concern all of us dedicated to the ideals of global health: “what is at stake if our public health and scientific leadership do not respond to this worrisome turn of events?” Yet now over a decade later, there has been a continued erosion of trust in public institutions and scientific research in many parts of the world. Earlier this year, one of the organisers of that historic AAAS study, the Harvard immunologist Barry Bloom, wrote to me about that historic meeting: “we brought people together from different constituencies for the first time and outlined a research agenda. It was such a successful start that CDC [US Centers for Disease Control and Prevention], who participated in the meeting, allocated the first funds in 10 years to collect data on people’s understanding and attitudes about vaccines.” However, since that time there has been a rise in anti-science, anti-vaccine groups, and online misinformation and disinformation. Bloom noted despondently “that current attitudes, and COVID-19 vaccine take-up in the US are dismal”.
Another benchmark study is the PERITIA (Policy, Expertise, and Trust) project that investigated public trust in expertise. From 2020 to 2023 this EU funded interdisciplinary study investigated the role of science in policy decision making and the conditions under which people should trust and rely on the expert opinion that shapes public policy. The researchers sought to help citizens and policy makers understand trust in science and identify trustworthy expertise. One of the study’s many instructive findings underlined the necessity of “trustworthy and trust generating science communication”.
Changes in communication have continually disrupted established approaches to the ethics of communication and the digital age has brought new challenges. This was clear in public responses to the COVID-19 pandemic and to the question of mass vaccination. A leading researcher in the field of global immunisation and communication is the anthropologist Heidi Larson. As the Founding Director of the Vaccine Confidence Project, her perceptions of the public health communications strategy and messaging during the pandemic are insightful. On the relationship between public trust and vaccination, she told me: “In 2020 nobody at the public level was talking about vaccines. It was about masks or no masks, and social distancing. We didn’t talk about vaccines, and in the science community we really failed by not communicating more about what was in the pipeline. We could have been talking about the two key mRNA candidates and getting the public familiar with a technology that had been in existence for over a decade. We blew it.” Evidently, questions of trust hinge on clear communication: we need a continued flow of information, and not to only address the public at a time of crisis.
In this sense, clarity of communication is one element that lies at the heart of the issue, not least because good communication revolves around presenting and assessing the reliability of evidence. As the philosopher Onora O’Neill told me, this is a hallmark of trustworthiness—a quality that should be a topic of study in its own right alongside that of trust. In this conceptualisation trustworthiness happens when people show honesty, reliability, conscientiousness, and competence, presenting evidence in ways that make it accessible, intelligible, useful, and easily assessed. Similarly, high-quality evidence-based communication should also be embedded in how the scientific community engages with public attitudes and opinions. Rather than being dismissive or condescending, if the scientific community wants to build and maintain the public’s trust, then, according to O’Neill, it “must encourage the articulation, consideration, and testing of claims that might, or might not be false”. Global health research is after all expressed in terms of probability.
Mechanisms need to be found to rebuild architectures of trustworthiness in global health. This is not something that can be achieved overnight; it must be done cumulatively, with the aim of cultivating more critical thinking, encouraging people to identify the trustworthy, and providing others with indications of one’s own trustworthiness. And although the reshaped communication landscape presents understandable dangers, it also offers opportunities to develop evidence-based approaches to implement global health programmes in consultation with the populations that clinical researchers are pledged to protect. This requires a commitment not only to the production of high-quality scientific evidence, but also to the narratives that surround it, recognising the power of misinformation and distrust.
Indeed, there is a groundswell of conviction across disciplines and geographies that one way to improve the trustworthiness of medical research and global health is to harness the power of storytelling. This great instauration of scientific storytelling can be achieved through collaborations between scientists, scholars in different disciplines, and storytellers to form persuasive proxies of trustworthiness who can disseminate information creatively, in a way that is easily understood and authentic. There is evidence, for instance, that communicating the benevolence of scientists could help to forge a greater sense of trustworthiness. Using an integrated model of organisational trust, researchers found short biographies of scientists that highlighted benevolence correlated with a greater willingness to trust. Tellingly, the study noted, “To form perceptions of scientists as trustworthy, people must be regularly exposed to trustworthy scientists”.
Good science has to be communicated in a memorable and accessible form. New initiatives are being advocated to improve vaccine uptake by funding more robust vaccine-safety research and to outline a strategic practical agenda for incorporating trust into pandemic preparedness and response. Relatedly, one of the inescapable conclusions of the COVID-19 pandemic was that it is important to communicate on the community level. Building from the grass roots is crucial because trustworthiness is both scalable and intersectional. One of the most compelling aspects of a well-functioning community is that it can scale trustworthiness beyond individual relationships. We have memorable evidence of this in an NTD setting for the community-based distribution of ivermectin tablets for the treatment of river blindness in Africa during the 1990s. Following a large randomised controlled trial, distribution by local trusted community workers proved to be far superior to mobile team delivery methods. Similarly, a direct connection exists between the sense of trustworthiness a patient has for a general practitioner and the willingness to follow the recommendation to “get a jab” during a pandemic. Perhaps most strikingly during the COVID-19 pandemic, nations that had pre-existing high levels of trust within society and between society and the state generally fared better in terms of observation of physical distancing and vaccine take-up.
Community and communication are therefore one clear way forward—building trust from the local to the global, in a way that is embedded and constant, not episodic. With this in mind, increasingly global health agencies, researchers, and communities across geographies are collaborating with the aim of finding practical solutions to the complex problem of improving trustworthiness in global health and global health leadership. Such work also needs to recognise efforts to rebalance power dynamics between researchers and institutions in the Global South and Global North. There is now a widespread belief that if the remarkable improvements in global health, including the reductions in HIV and malaria deaths and the accelerated improvement in maternal and child health, are to be maintained and improved upon during the Sustainable Development Goals timeline, then decisive action needs to be taken.
Many of the most successful and innovative projects in global health over the past 50 years began by identifying a concrete problem and a practical aim. With this in mind, and with increasing attention in policy and research being given to improve trustworthiness in global health, I and a group of researchers and scientists are embarking on a new and ambitious study that is situated at the confluence of the scientific and the social. This interdisciplinary Trust Alliance will prioritise storytelling and knowledge sharing and has three specific strands. First, to explore the relationship between trustworthiness, policy making, and public opinion and the climate and health sciences. Second, to understand the culturally and socially contingent nature of trust in diverse national and regional contexts. Third, to create a forum for dialogue between practitioners to collaboratively advance thinking on trustworthiness in global health and to communicate project findings with a range of public audiences to engage with public feedback and responses. The objective is to tell the stories of global health in a way that captures the imagination of the public, policy makers, donors, community field workers, and scientists, and to do so in a way that is accessible, intelligible, useful, and easily assessed. It is hoped that these efforts will contribute to reducing the dangerous gap in trust that has been identified between countries, within countries, and within communities that threatens global health. This collaboration would warmly welcome other researchers to join us in what we believe is a meaningful, timely, and necessary endeavour.
Many people now believe that an inflection point has been reached, and that it is essential to start rebuilding trustworthiness within global health given its indispensability. As we have already witnessed in the 21st century, once that essential resource is lost, it is difficult to regain. Much depends on rapidly building or rebuilding trustworthiness at a time when international cooperation and pandemic preparedness is being hampered by the growth of defensive nationalism in some countries. Equitable, international, interdisciplinary, and collaborative storytelling about trustworthiness is one way to foster and sustain trust and trustworthiness in global health and global health leadership.
Conrad Keating
UCD Centre for Experimental Pathogen Host Research (CEPHR),
School of Medicine, University College Dublin, Belfield, Dublin 4, Ireland
conrad.keating@ucd.ie
Prof Keating reports a grant from Sightsavers, one of the partners in the Trust Alliance project.
To find out more about UCD Centre for Experimental Pathogen Host Research (CEPHR), visit here.