Public engagement in decision‐making regarding the management of the COVID‐19 epidemic: Views and expectations of the ‘publics’

Abstract Background In the management of epidemics, like COVID‐19, trade‐offs have to be made between reducing mortality and morbidity and minimizing socioeconomic and political consequences. Traditionally, epidemic management (EM) has been guided and executed attentively by experts and policymakers. It can, however, still be controversial in the public sphere. In the last decades, public engagement (PE) has been successfully applied in various aspects of healthcare. This leads to the question if PE could be implemented in EM decision‐making. Methods From June to October 2020, seven deliberative discussion focus groups were executed with 35 Dutch citizens between 19 and 84 years old. Their views on PE in COVID‐19 management were explored. The deliberative approach allows for the education of participants on the topic before the discussion. The benefits, barriers, timing and possible forms of PE in EM were discussed. Results Almost all participants supported PE in EM, as they thought that integrating their experiences and ideas would benefit the quality of EM, and increase awareness and acceptance of measures. A fitting mode for PE was consultation, as it was deemed important to provide the public with possibilities to share ideas and feedback; however, final authority remained with experts. The publics could particularly provide input about communication campaigns and control measures. PE could be executed after the first acute phase of the epidemic and during evaluations. Conclusions This paper describes the construction of an empirically informed framework about the values and conditions for PE in EM from the perspective of the public. Participants expressed support to engage certain population groups and considered it valuable for the quality and effectiveness of EM; however, they expressed doubts about the feasibility of PE and the capabilities of citizens. In future studies, these results should be confirmed by a broader audience. Patient or Public Contribution No patients or members of the public were involved in the construction and execution of this study. This study was very exploratory, to gain a first insight into the views of the public in the Netherlands, and will be used to develop engagement practices accordingly. At this stage, the involvement of the public was not yet appropriate.

expressed doubts about the feasibility of PE and the capabilities of citizens. In future studies, these results should be confirmed by a broader audience.
Patient or Public Contribution: No patients or members of the public were involved in the construction and execution of this study. This study was very exploratory, to gain a first insight into the views of the public in the Netherlands, and will be used to develop engagement practices accordingly. At this stage, the involvement of the public was not yet appropriate. spread across countries worldwide leading to a pandemic. It has heavily impacted the health and safety of citizens, as well as other aspects of society, such as the economy, social structures and politics. 1 When an epidemic such as COVID-19 occurs, its management is pivotal in containing the virus. According to the World Health Organization (WHO), the goal of epidemic management (EM) is: 'to mitigate its impact and reduce its incidence, morbidity and mortality as well as disruptions to economic, political, and social systems'. 2 EM is used in this study as an overarching term that entails the step-by-step process of decision-making regarding all necessary actions before, during and after an infectious disease outbreak, to minimize the impact of the outbreak on all aspects of society. 3,4 In the urgency of EM decision-making, various societal principles, such as solidarity, justice and liberty, have to be weighted, within a climate of fear and distress. Other characteristics of epidemics, such as social disruption and scientific uncertainty, complicate these tradeoffs even more. 5 Traditionally, EM has been mostly guided by public health organizations, governmental bodies, and scientific experts. 6,7 Their blend of expertize and experience is used to trade-off between reducing mortality and morbidity and minimizing its associated socioeconomic and political consequences, within troubling circumstances. 8,9 This complex interplay of principles, troubling circumstances and strong decision-related impacts within EM raises questions about how decisions are being made. As we currently rely heavily on experts, valuable input from other sources might be overlooked, for instance, that of the public. 10 Recently, public health officials, such as the WHO and ECDC, have been emphasizing the importance of public engagement (PE) in the management of various epidemics. 2,11 PE is the spectrum of processes and activities that brings the public into a decision-making process. In the literature, three main rationales for PE exists. [12][13][14] First, the normative rationale describes engagement itself as a valuable process that increases the democratic validity of decisionmaking. Second, the instrumental rationale describes PE as a means to obtain the most beneficial outcome. Deliberation with citizens provides policymakers with information about the failure or success of certain policies. Simultaneously, citizens acquire information about the intent and context of policies, which can foster trust and understanding. Overall, both the public and policy makers can gain insight into EM from PE, which could potentially result in a more fitting course of action, mitigation of opposition to a chosen policy, and an increase in support. 8,15 This could especially be important when the public has already been showing much discontent with implemented EM policies. During COVID-19, this happened in the Netherlands on several occasions, as many demonstrations, protests and petitions were set up by the public. 16,17 Even riots arose as a backlash to the implemented nightly curfew. 18 Third, the substantive rationale entails using the values of the public as a foundation for policies. These values transcend interests attached to certain positions or systems. Experiential knowledge is respected in decision-making and could complement expert knowledge. 9,19 Moreover, the public could perceive problems and solutions that experts may not notice. 20 The desired mode of PE is context-specific and can vary between informing, consulting, collaborating with and empowering the public. 21 Despite the seemingly promising potential of PE, until now, a few efforts have been made to integrate the perspective of the publics (this 'public' cannot be classified as monolithic, but actually comprises people with a diverse range of demographic, epidemiologic, social and economic characteristics. To respect this complexity and diversity, the term 'public' is replaced by 'publics'. Publics refers to all persons living in the Netherlands, with no limitations on a particular group based on demographic, epidemiologic, social or economic conditions) in EM. 22,23 Which could be an indicator of how challenging integrating PE in EM is, due to the complex nature of EM. For instance, in the United States, Mexico and Nicaragua, communities were consulted to shape culturally appropriate control strategies and communication efforts concerning Zika virus and dengue virus, which resulted in a higher-quality EM on a local level. 24,25 Specifically in the Netherlands, valuable citizen assemblies and consultations have been executed to reveal public preferences on for instance vaccination strategies and relaxation of measures. [26][27][28] However, many of these examples are one-time engagement efforts without clear follow-up.
Besides, most of these practices are predefined, and the engaged publics to be are not asked about their preferences on the forehand.
In this study, we try to take a step backwards and gain insight into the views of the publics concerning their engagement in the management of COVID-19, to identify accompanying possibilities and challenges.
As the opening quote stated, the COVID-19 epidemic can be seen as an opportunity to learn. This paper explores the possibilities for the role of the publics in COVID-19 EM in the Netherlands, which leads us to the following research question: What views and expectations on public engagement are present in the management of the COVID-19 epidemic from the perspective of the publics in the Netherlands?

| METHODS
Between June and October 2020, seven Online Deliberative Discussion Focus Groups (DDFGs) were held with members of the general public in the Netherlands. The deliberative approach leads to more knowledgeable and thoughtful participants, especially on subjects that may be somewhat unfamiliar. 29 We expected that EM might be unfamiliar to participants. All sessions were moderated by two researchers (S. K. with F. K. or L. S. K. K.) and lasted 2 h. The online sessions were facilitated via the meeting software GoToMeeting and were executed in Dutch. The DDFGs were not intended to yield a representative sample of the Dutch population but to provide an in-depth exploration of the diversity of views that exist among the publics. The first three DDFGs were held in June 2020, when the first epidemic wave in the Netherlands had ended and the situation had stabilized. In response, the government decided to relieve restriction measures. The second set of DDFGs (number 4-7) was held in October 2020, when the outbreak situation was deteriorating again and new restriction measures were announced.
Participants were recruited via two panels. The first three DDFGs were executed with panel members of the Dutch Health Care Consumer Panel, which is managed by Nivel, the Netherlands Institute for Health Services Research. To maintain social homogeneity in the sessions, age stratification was applied. This decision was made because age has an influence on risk perceptions and protective behaviour during the COVID-19 epidemic. 30 Per age category (see Table 1), a random sample was taken from the panel members (around 1500 panel members), who subsequently received an e-mail invitation to participate. From the panel members who wanted to participate, a selection was made based on gender, age (within the designated age category), education level and place of residence, to strive for maximum diversity within all three DDFGs.
The remaining four DDFGs were executed in collaboration with CG Research, a general market research firm. After the first three DDFGs, the research team (S. K., F. K., M. B., A. T.) decided that the views captured did not entirely correspond with the whole range of views present in the publics. This decision was based on a rough analysis of the public discourse at that period by means of news articles, and a national study concerning the attitudes and behaviour of the public. Overall, much criticism was expressed regarding the management of COVID-19, and the publics felt that they were not being heard. [31][32][33] These views did not entirely correspond with what the participants of DDFGs 1-3 expressed, as they appeared to be more satisfied with how COVID-19 was managed at that time. To broaden the diversity of views within the sample population, a second panel was used. For the sampling procedure, stratification by age was again applied, of which a random sample was taken. The age categories per DDFG are displayed in Table 1

| Data analysis
The recordings of the sessions were transcribed verbatim, and a thematic analysis was executed using MAXQDA 2020 software. The thematic analysis approach, which used both inductive and deductive coding, was chosen to identify, organize and reveal patterns of meaning derived from the content of the data itself. 35  The public is provided with timely and consistent information. a The public is asked for feedback on questions or problems. This feedback is nonbinding.
The public is asked for advice for the whole process, and their advice is integrated into the final decisions.
The public is seen as a partner. The public has the ultimate decisionmaking power. They receive support. a The first mode of engagement presented was inform, which is in itself not necessarily a mode to actively integrate the perspective of the other. Nevertheless, it was important to mention as in some situations, there may be no need for active engagement. 3 | RESULTS

| Participants characteristics
In total, 35 citizens participated in seven online DDFGs. Every session had 4-6 participants, which was suitable for the online nature of the sessions. The characteristics of the participants are displayed in Table 3.

| Why and why not: Values regarding PE in EM
Most participants stated that their current role in EM mostly entails receiving information about COVID-19 management (see Table 4   Furthermore, a few participants stated that they felt overwhelmed by the information overload online at the start of the epidemic. Other participants also held the media accountable for unclear information.
According to the participants, the inadequate communication resulted in public unrest, lack of confidence in the government and decreased compliance with restriction measures.
According to almost all participants, the most fitting mode of PE in EM would be consult. It was important for them that the publics receive more influence in EM. The participants explained that with consult, the publics feel that they are being listened to and taken seriously, and they can provide ideas to improve the quality of EM.
Participants stressed that experts should still be in the lead.
Participants found it valuable to let the publics function as a sounding board, to provide decision-makers with insight into their experiences.
Feedback from the publics could be asked to prevent unclarities in communication efforts. A few participants, however, found that consultation was already taking place, due to the existence of the representative democracy in the Netherlands. As such, the repre-  'We live in a free country with many different opinions, so there will always be people complaining that their opinion was not heard. As such, there will always be dissatisfied people'. Collaborate and empower were deemed not suitable by most participants because of the publics' lack of knowledge and experience with EM. This undermined the trust they had in the capabilities of the publics to contribute. All participants agreed that providing the publics with the decision-making power in EM would not be desirable. People expressed suspicions that those engaged might put their own interests ahead of the interests of the general public.
Overall, many participants found it meaningful to receive more details about why certain decisions were made. In addition, when integrating PE in EM in practice, it would be important to hear why the views of the publics would be integrated or why not. In line with this, some participants felt a lack of transparency in EM from the government. They expected that increased transparency leads to increased trust of the publics in the government. This trust was deemed crucial during an epidemic by a few participants.

| When: Period for PE
According to most participants, the priority at the start of an epidemic is to rapidly control it. At that stage, swift action is necessary and a lack of knowledge is likely. Due to these beliefs, PE was deemed not beneficial at the start of the epidemic (  'I think that if you want to engage everyone, the ones who scream the loudest will get their way, which is what is happening now. If a minority thinks we should do A, and the silent majority thinks we should do B, A will be implemented because of the fuss. I think the only possibility is inform'. (Female, DDFG 1) 'Conspiracy theorists will say; this is not necessary, and that should not happen, and this is wrong…. They are going to interfere with aspects they think they know about, but in reality do not have any knowledge on'. (Female, DDFG 5) 'I am still thinking about two groups within the public. You have the people who are analyzing everything, who are considerate, who are sensible and who can make correct conclusions. And you have the sheep, who do not understand everything well but who are constantly stomping their feet. And of these groups who do we have most in society? … I can conclude that these people are a big part of society. If you can calm them… but then again, this is a dangerous statement as I am judging myself, which is also not correct'. Overall, this is the first exploratory study to reflect upon this type of insight into PE in COVID-19 management from the perspective of the publics. Moreover, the data were collected during the COVID-19 epidemic, which yielded relevant outcomes of current interest.

| Principal findings
Overall, participants expressed positive attitudes towards PE in EM. control strategies, to make strategies more feasible and acceptable. 8,22,40,41  Altogether, there are clearly specific aspects of EM that remain challenging, and which explain the views of the publics with regard to the extent to which PE can be incorporated into EM. These should be taken into account when doing this in practice.

| LIMITATIONS
Multiple characteristics of the DDFGs could have impacted the attitudes of the participants, such as socially desirable behaviour in a group setting, influence of facilitators and information that was provided. To combat this, multiple strategies were implemented such as creating an open context, limiting the number of participants and establishing rapport, which was occasionally difficult to do because of the online nature of the DDFGs. 29 With regard to our study population, no persons living in the north of the Netherlands were included, persons with an education level between 0 and 2 were underrepresented and no stratification for ethnicity was applied. This is unfortunate, as these groups could have experienced the epidemic differently; for instance, there were fewer COVID-19 cases at the time of the DDFGs in the North and people with a migration background in the Netherlands suffered more health and societal consequences from COVID-19. 60, 61 We are aware that our sampling strategy could have led to a sample population with two opposing views on PE in EM, and might not be comparable to each other.
Besides, participants of DDFG 4-7 might have biased the overall results towards a less critical view of PE in EM. Furthermore, results might have been different if we did not use panels, as these populations differ in certain characteristics from the general population, for instance, they might display a more positive attitude towards engagement, if they regularly attend focus groups to share opinions. Regarding the study context, the future course of the epidemic was uncertain, these feelings of uncertainty and fear could have impacted the attitudes of the participants, mostly on the sense of urgency about PE in EM. These participants could have graded PE in EM as less important in hindsight, knowing that the epidemic is over. On the other hand, recall bias is minimized. 62 Overall, it is important to keep this context in mind, and the fact that the study is conducted during two different time periods in the outbreak.

| Future research
To our knowledge, this is the first study that directly explores the views of publics on possibilities for PE in EM. The next step would be to identify the views, expectations and needs of various groups within the publics. 'The public' is not a homogeneous entity but a complex and dynamic collection of multiple groups with various characteristics. This could impact the approach to PE in EM and its diversity. In line with this, more attention should be given to conceptual clarification of the various groups within the publics who can contribute to EM decision-making such as the representatives our participants suggested, and be aware of inclusivity and diversity within these groups.

| CONCLUSIONS
This paper explored the perspective of the 'publics' on PE in decisionmaking regarding the management of the COVID-19 epidemic in the Netherlands. This exploration was done in the midst of the COVID-19 epidemic itself, which was a unique opportunity. The participants agreed that targeted PE could positively influence the quality and effectiveness of COVID-19 EM. Furthermore, the participants called for more accountability of the decision-makers, and more transparency in the EM decision-making process.
As our participants are clearly aware of the complexity of EM, they are not asking to replace current decision-makers in EM. What they do wish is for their voices to be heard and their experiences, ideas and feedback to be taken seriously in developing and improving COVID-19 management.