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The importance, and fragility, of trust in medical science was perhaps never more salient than during the COVID-19 pandemic. The World Health Summit (WHS) this month will convene global health leaders to discuss strategies for “Building Trust for a Healthier World.” An often overlooked yet critical factor in cultivating trust in global health is the failing, fragmented global system for research publishing—an issue that is noticeably missing from the current WHS agenda. In this paper we explore the link between trust and access to evidence in global health and offer recommendations for action for global health leaders.
Key messages
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Trust in medical science is crucial for global health progress. A strong foundation of public trust in scientific research is essential for addressing complex health challenges and ensuring compliance with health recommendations.
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The global research publishing system undermines access to knowledge, with more than half of published research behind costly paywalls, preventing equitable access to information, particularly for low-income countries.
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Paywalls create a divide in the sharing of knowledge, reinforcing an “us vs. them” mentality and restricting the dissemination of publicly funded research to those who can afford it, undermining global trust in science.
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Access to evidence influences trust in science and health advice. In regions where access to scientific evidence is limited, levels of trust in science are consistently lower, as reflected in surveys such as the Wellcome Global Monitor.
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Global health diplomacy can be a catalyst for change in the research publishing system. At forums like the World Health Summit, leaders have the chance to push for open-access reforms that democratize scientific knowledge and foster greater trust in health advice across all regions.
Building health on trust: Why a strong foundation matters and how it may be at risk
Trust in science and health institutions offers many benefits to populations. It is a determinant of health outcomes, influences adherence to evidence-informed health behaviours, and warrants the development of evidence-based policies and government funding for research. Efforts to solve problems pertaining to public health, social inequity, or climate change are more likely to be successful with a strong foundation of public trust in our institutions. This is because trust is a fundamental component of social capital, essential for social adherence to the health recommendations of experts, and more broadly, economic development and improving societies. Put simply, in order for people to seek, and act on, medical and public health advice, they need to have trust in the individuals and institutions giving that advice.
The evidence on the degree of public trust in science is mixed but highlights room for improvement in all countries and concerning levels of low trust in some. The Wellcome Global Monitor finds a broad increase in trust in science in 2020 and another recent large scale survey also finds generally high levels of trust in scientists. However there are two important caveats. First, a meta-analysis of several smaller scale surveys finds generally falling trust in science since the start of the pandemic. Second, the Wellcome survey consistently finds that trust in scientists was lower in lower-income countries and trust in science in sub-Saharan Africa fell in 2020 (Figure 1).
While the evidence is difficult to parse, there is a widespread perception that trust in science is diminishing. Last month the UN Secretary-General’s Scientific Advisory Board on Trust in Science released a statement noting that “lack of public trust has been further deepened by the spread of misinformation, disinformation, and the erosion of evidence-based thinking.” It’s worth noting that this trust deficit may reflect an increasing distrust of science among a minority rather than a broader trend towards science scepticism. A distrusting minority could still fuel public health issues such as the spread of vaccine preventable diseases, and may also have an outsized impact on political discourse and public policy.
Figure 1. Wellcome Global Monitor Trust in Science Index by region
Source: Reproduced from the 2020 Wellcome Global Monitor.
Perceived knowledge of science, confidence in government, and perceptions of who benefits from science can either build or erode trust. Amid rising populism, expanding authoritarian rule, and the increasingly ‘post-truth’ era where mis- and dis-information is rising, this places trust in science and health institutions at risk; in effect, placing health outcomes at risk too. During the COVID-19 pandemic, false information created the impression that official sources of information were not credible. Similar challenges have been documented for issues like vaccination, public health policy compliance, and climate change, with people tending to dismiss expert advice and question the legitimacy of their authority. This environment of wavering trust may be further challenged by the lack of action in ensuring access to accurate health information.
Strengthening the foundations of trust: The critical role of access to evidence
Transparency is critical to fostering trust, particularly in public policy. A recent review by the British Academy into strengthening public trust in science for policymaking emphasised the importance of transparency in how evidence is used. In part, this means transparency in the processes involved in policymaking and how evidence or expert advice feeds in. However, the limitations on access to scientific evidence also play a role in undermining transparency. Research paywalls do not simply restrict access to (often publicly funded) science and health information. They create closed digital spaces which engender a sense of otherness, of us and them, and of private knowledge rather than shared knowledge. As a result, the system that publishes this research, which should serve as a bulwark against mis- and dis-information and strengthen public trust in science and health institutions, may do the opposite.
Despite decades of efforts to promote open access research, at least 55 percent and up to 70 percent of published research remains locked behind paywalls that require costly pay-to-read subscriptions. The sector is dominated by a handful of for-profit publishing companies who have profit margins higher than big tech companies. In essence, publicly funded research that should be a global public good ends up filling the pockets of commercial publishers, does not yield the full potential benefits for the investments, and has implications for policy, innovation, and trust in scientific advances. We have unpacked how the research publishing system is an under-recognised global challenge previously. These barriers to access will affect readers, and researchers, in low-income countries more acutely.
The problems paywalls pose for research is perhaps most strikingly highlighted by policies in times of crisis. Time and again, the push to ensure informed decision-making and combat misinformation in responses to epidemics and pandemics result in ad hoc open policies and practices (see Box 1). The fact that cross-disease flows are especially important for vaccine innovation underscores the need for access to research to inform evidence-informed decision-making for all diseases to prevent rather than merely respond to disease outbreaks. Moreover, these exceptions highlight a fundamental problem with the status quo: access to evidence is crucial in health emergencies, but it remains equally important in non-emergency situations.
The connection between research publishing challenges and trust in science may well run deeper than access to evidence. In an effort to remove paywalls, the sector has partially shifted from pay-to-read to pay-to-publish, with an increasing number of prestigious journals requiring upfront payments typically costing thousands of dollars for a single publication (and up to $12,290 at the top end). This shift restricts participation in the global scientific discourse to researchers with wealth backers, be they governments, private individuals, or foundations. The voices heard in important scientific discourse are not necessarily those with the best studies but may be those with access to deep pockets. In theory, many journals have fee waivers, but researchers in low- and middle-income countries consistently report challenges in obtaining them. Moreover, for something as important as the dissemination of new research, equitable access should be the integral, not a partial work around. These barriers to participation in the global research system, in addition to other research inequities, may contribute to lower levels of trust in science in lower-income countries.
Box 1. The exceptions that prove the rule: Temporary efforts towards open science during global health emergencies
Ebola
During the Ebola outbreak, new global mechanisms to support knowledge-sharing and research helped to build trust and engage communities as part of the response. Reports note that 80 percent of epidemiological studies used data from an open source, and collaborative multilateral information-sharing agreements made desirable information accessible. However, the hoarding of genomic data and numerous obstacles to managing the disease did not complement these knowledge-sharing efforts and hampered the Ebola response.
Zika
In the case of Zika, the global scientific community committed to sharing data on Zika and future public health emergencies, intending “to ensure that any information that might have value in combatting the Zika outbreak is made available to the international community, free of charge, as soon as is feasibly possible.” This was a reactive response to the Zika outbreak, perhaps responding to the lack of scientific evidence about the consequences of Zika and the rising mistrust in government institutions that may have allowed rumours and alternative explanations about Zika to spread, like in Brazil. Moreover, the data sharing commitment encouraged the use of article preprints, which, when used expedited article access by a median of 119 days earlier than journal publication dates.
COVID-19
Viral genomic data sharing occurred during the COVID-19 pandemic. Alongside the rapid response to the pandemic and the rapid nature of understanding the disease through these means, measures of trust in the government and interpersonal trust had larger, statistically significant associations with lower standardised infection rates.
Mpox
In 2022, the White House Office of Science and Technology Policy and science and technology leaders from numerous countries released a call to action to make mpox-related research and data immediately available to the public. Responses to this call include the National Library of Medicine leveraging existing relationships with PubMed Central to make mpox-relevant articles freely available to the public.
How can global (health) leaders open the gates to accessible scientific knowledge
Reform efforts led from the Global North have largely focussed on academic or funding institutions rather than higher-level political engagement at the national and international level and elevating this issue to involve the public. A more transformative and inclusive vision for change involves addressing challenges that are principally political, rather than technical or economic. A targeted science diplomacy effort could reform our global systems for publishing research and sharing knowledge at the international level.
As a sector, health is often at the cutting edge. Research techniques such as randomised controlled trials became mainstream in medicine during the 20th century with the Nobel Prize for their application in development economics being awarded in 2019. Health diplomacy has successfully catalysed action on major global health objectives such as universal health coverage and various disease eradication campaigns. Health diplomacy can play a leading role in science diplomacy with a goal of achieving truly open and effective research publishing spaces, shoring up trust in science and health institutions on the way.
As we have outlined previously, the G20, with its broad membership and potential for leadership from emerging economies, presents an excellent opportunity for catalysing research publishing reform. Key subgroups include the Chief Scientific Advisors Roundtable or the Research and Innovation Working Group. These groups might consider engaging with the Scientific Advisory Board on Trust in Science, a group of seven leading scientists appointed by the UN Secretary-General in 2023 to advise senior UN leaders.
What can be done at the World Health Summit and beyond?
The World Health Summit brings together leaders, policymakers and health professionals from across the world. This year’s theme of “Building Trust for a Healthier World” invites attendees to think beyond many of the more concrete issues that commonly preoccupy the global health community and consider the upstream, hard-to-measure factors that constitute the complex ecosystems that healthcare systems operate within. When considering trust in global health next week, we invite WHS participants to reflect on the role of the global research publishing system in fostering or undermining trust in health advice. Trust is built on openness, admission of uncertainty, and mutual respect. Working towards a research publishing system that inspires rather than breaks trust is critical if we want to instil public trust in science and health institutions.
To achieve this WHS participants can:
- Work towards shifting the system and investing in alternative publishing platforms not reliant on fee waivers; supporting low- and middle-income country-led and managed journals and other publishing platforms as critical parts of national and regional research systems.
- Influence policy areas for action to champion equitable funding mechanisms and pursue policy harmonisation
- Increase public engagement and understanding of science and open access issues to address public trust concerns (considering insights to enhance trust in science for policymaking) and empower citizens to engage with research to dispel misinformation in and about science
- Use other forums and channels for health science diplomacy to help elevate the issue of research publishing reform
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