What does it mean to engage the public in the response to covid-19?BMJ 2021; 373 doi: https://doi.org/10.1136/bmj.n1207 (Published 26 May 2021) Cite this as: BMJ 2021;373:n1207
- Naomi Scheinerman, postdoctoral fellow in ELSI genetics and genomics1,
- Matthew McCoy, assistant professor of medical ethics1
- 1Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, USA
- Correspondence to: N Scheinerman
Over the past year, numerous individuals and institutions have called on governments and other authorities to engage, involve, or include the public in covid-19 response and recovery efforts.12 In the United Kingdom, for instance, the Nuffield Council on Bioethics urged the government to ensure that key decisions about covid-19 are “taken with the widest possible engagement across all sections of society.”3 In the United States, a coalition of more than 100 voluntary associations pressed government agencies to “recommit to, and not retrench from, their duty to include the public” in policy making processes related to the pandemic.4
These calls follow a long campaign to increase public engagement in urgent or controversial matters of health and science policy and make an intuitively compelling appeal to democratic values.5 They rest on the premise that consequential decisions about the response and recovery from covid-19 should not be left to experts but should instead be subject to inclusive debate and deliberation. Public engagement is particularly important during the covid-19 pandemic when the effectiveness of measures such as masking, social distancing, and vaccination requires cooperation and trust across all sectors of society.
However, as with previous calls for public engagement, the meaning of “engagement” and its practical implications for covid-19 response and recovery are complex and at times ambiguous.6 We examine the different types of demands found in calls for public engagement in pandemic decision making and explain how to meet them (table 1). We focus on the responsibilities of governments because their decisions have far reaching social consequences, but institutions such as hospital systems, schools, corporations, and universities also make decisions that profoundly affect the communities they serve and should engage affected communities in their decision making.
Common to almost all calls for public engagement in covid-19 response and recovery is a demand for transparency on the part of government officials and other authorities responding to the pandemic. As the Nuffield Council wrote in an open letter to the UK prime minister, government should “show the public what it is doing and thinking across the range of issues of concern.”3 But a review of decision making related to covid-19 in 24 countries found “little transparency regarding whom decision making bodies are consulting as their source of advice and information.”13
Transparency involves the flow of information from government to the public. It does not require that members of the public take an active hand in responding to the crisis but is critical to enabling more direct involvement in at least two ways. Firstly, knowledge of how government agencies are managing the pandemic gives individuals, civil society organisations, and businesses the information they need to play their parts in pandemic response and recovery. Secondly, transparency allows individuals and institutions outside of government to scrutinise government plans, highlight errors, criticise misguided policies, and recommend alternative courses of action. Several government guidelines on mask wearing, testing, and other areas of pandemic response have been constructively revised in response to public criticism.14
Transparency can also build public trust in government. An investigation of public perceptions of the UK government’s covid-19 response found that “the extent to which a government may be able to foster public trust in their [sic] responses to pandemics appears to be closely linked to the coherence and transparency of their communication strategies.”15 Notably, however, the study also found “significant differences in levels of trust across geographical, income and educational backgrounds,” which suggest the need to “develop measures such as targeted community engagement that tailor messaging and public deliberation to the realities faced by particular social groups.”15
Municipal and regional governments have a critical role in delivering this type of locally targeted outreach. In the US, several city leaders have partnered with local community and faith based organisations to counter concerns about vaccines among communities with “historical experiences with discrimination.”10 This is a successful example of a complementary relationship between national and local leaders. While national health agencies have the resources to synthesise scientific information into guidelines, local officials need to tailor and explain guidelines to their communities.16
Beyond pushing for transparency about the substance of policy decisions and planning around covid-19, the Nuffield Council called on governments to “set out the ethical considerations” underlying these decisions.3 This demand is based on the principle that government policies must be justifiable to those affected by them, particularly those negatively affected by a decision.
While it’s tempting to believe that effectively managing the pandemic is simply a matter of following the science,17 critical questions such as when and under what conditions to reopen businesses or how to allocate vaccine doses are value laden, involving trade-offs between competing goods and interests.18 Authorities need to justify the selection of a particular course of action not just in technical terms but in ethical ones, and commit to principled decision making.
This promotes accountability by enabling members of the public to pressure authorities to live up to their stated principles. For example, criticisms of the UK government’s handling of covid-19 in adult social care settings noted that although the government espoused a commitment to be “transparent about why decisions are made and who is responsible for making and communicating them,” it failed to provide “detail on how a decision was taken to leave the most vulnerable people in society and their carers unprotected.”19
Providing ethical reasoning can also foster constructive discussions about how best to realise stated principles. For example, several authorities have emphasised that vaccine allocation should prioritise disadvantaged populations.20 By clearly articulating this aim, these authorities have prompted broader discussions about how to conceptualise disadvantage in the context of covid-19, and how to achieve the goal of prioritising disadvantaged populations. This debate has led to concrete proposals such as using a social vulnerability index to prioritise areas for vaccine allocation.20
International organisations, national bioethics commissions, and others have published ethical frameworks that can help governments and other authorities to articulate the principles guiding policy decisions and trade-offs.212223 These frameworks identify ethical considerations raised by various covid-19 response measures and provide practical guidance for weighing these considerations in concrete cases. Ultimately, however, it is the responsibility of authorities to work with relevant stakeholders to develop and communicate principles guiding pandemic response measures.18
While some calls for public engagement in the covid-19 response emphasise governments’ responsibility to share information with the public, others emphasise ways that the public should be actively involved. These often appeal to ideals of deliberative democracy, arguing that citizens can and should engage in politics not just by voting in elections but through ongoing debate and discussion. This can happen through “informal” types of deliberation across civil society and “formal” deliberation involving structured dialogue in institutional settings.24
Informal deliberation about covid-19 encompasses activities ranging from small scale conversations in online forums to opinion articles in national media and organised demonstrations. Informal deliberation can enhance institutional decision making by contributing information and perspectives that are not represented by experts and policy makers. As New York City moved to lift restrictions on businesses, for example, essential workers, advocates, and unions organised to demand workplace protections and to pressure state and local officials to enact regulations requiring employers to fully comply.25 By participating in this sort of deliberation, citizens communicate the challenges they face from covid-19 and apply political pressure to authorities responsible for addressing those challenges.
Governments have a central role in fostering informal deliberation by meeting demands for transparency by responding to questions and concerns emerging from the public sphere. But it is also critical that they remain aware of how underlying inequalities and power dynamics shape public discourse. Informal deliberation often amplifies the voices of those with greater resources and access to media platforms while crowding out the voice of marginalised groups that have been hardest hit by the pandemic and whose voices are crucial to designing equitable policy responses.26 Similarly, while events like virtual townhall meetings can provide a forum for community members to share their concerns and experiences, they perpetuate disparities in access to technology and the internet, widening existing gaps.27
Given these structural inequalities, responsible informal deliberation requires seeking out perspectives of disadvantaged groups that are often under-represented in the media, public meetings, and digital platforms. Doing so requires soliciting input across “multiple, accessible channels,” including community events and faith based gatherings.28 Authorities should work with non-profit and academic organisations that have compiled testimonies from disadvantaged communities. In the UK, for example, National Voices, a coalition of organisations “supporting people with physical and mental health problems and disability and those who are facing inequality or discrimination,” collects and publishes first person accounts of people’s challenges and experiences during covid-19.29 In the US, the Black America and Covid-19 Project collects and publishes evidence of the effect of covid-19 on the Black community with the goal of creating “material for teaching and learning about the contemporary effects of covid-19 among Black communities as it is tied to the historical legacy of race in America.”30
Finally, some calls for public engagement urge governments not simply to foster or engage with informal deliberation, but to convene formalised deliberative bodies, also called mini-publics.31 These are small groups of people (from around 10 to several hundred) who are selected, often at random, to engage in facilitated deliberation about policy topics related to covid-19.
Formal deliberative mechanisms create environments in which citizens with different backgrounds and identities are placed on equal footing and given the opportunity to learn from experts and share their perspectives on complex policy matters. Ideally, participants in mini-publics refine and revise their views through conversation with their peers, such that their recommendations or outputs can be said to reflect the “considered views”32 of participants.
Encouraged by recent successes of mini-publics,33 some believe that formal deliberation can inform covid-19 responses. In the UK, for example, local officials commissioned a 36 member citizen’s panel to consider evidence and weigh trade-offs in different recovery plans before forwarding a set of recommendations to the local recovery authority.34 Similarly, Oregon convened a seven day citizens’ assembly which developed a set of core principles and actionable recommendations to guide the state’s pandemic response and recovery plans with respect to housing and education.35
Despite their potential to capture a range of perspectives and to generate nuanced and considered feedback,36 mini-publics require substantial time, planning, and financial resources to succeed. This limits their use in responding to urgent problems during a public health crisis, and they should not be viewed as a substitute for other aspects of public engagement.
Before convening a mini-public, governments should identify particular questions or policy decisions for which the considered opinions of a diverse group of lay participants would be illuminating and how those opinions would be used to inform policy. In light of their strengths and limitations, mini-publics may be best suited to reviewing failures, success, and lessons from the current pandemic in order to better prepare for the next emergency.37
The ongoing process of responding to and recovering from the covid-19 pandemic should not be managed by policy makers and experts alone. It will continue to require extraordinary levels of communication and coordination across all levels of society. Governments and other authorities can realise these goals only by recognising and taking steps to meet demands embedded in calls for public engagement.
Growing numbers of voices have called on governments and other authorities to engage the public in pandemic response and recovery efforts
Transparency about decisions and their ethical framework is essential for engagement
Informal discussion through media and public meetings can help ensure success of interventions
Formal deliberation methods are slower and may be more suited to longer term planning
NS was supported by a T32 postdoctoral training grant from the National Human Genome Research Institute to the University of Pennsylvania (T32HG009496).
Contributors and sources: NS is a democratic theorist specialising in mini-public deliberative engagement, and MMcC is a bioethicist with a background in political theory.
Competing interests: We have read and understood BMJ policy on declaration of interests and have no interests to declare.
Provenance and peer review: Not commissioned; externally peer reviewed.