Patient and public engagement in decision-making regarding infectious disease outbreak management: an integrative review

Introduction

On a daily basis, the health of millions of people is threatened by infectious disease outbreaks worldwide.1 2 Outbreaks of infectious diseases occur frequently, such as Zika virus disease, dengue, measles or viral haemorrhagic fevers, with the COVID-19 pandemic as most recent example.3–6 In order to control these outbreaks, outbreak management (OM) policies are formulated.7 8 The goal of OM is to reduce the consequences of an outbreak on society, from individual level to macro level.9 However, even with OM policies in place, the impact of an outbreak on the health and safety of societies remains real and often detrimental. There are various reasons why OM might fail, varying from insufficient resources to poor acceptance of control measures.10 11

Within the ongoing process of OM, three key aspects are distinguished: risk assessment, risk management and risk communication. Together these form the risk analysis framework (figure 1). First, in risk assessment, the infection is identified and characterised, and the likelihood and severity of adverse health effects from exposure to the infection are estimated.12 Second, in risk management, all measures to minimise the outbreak are weighed, selected and implemented, in consultation with all relevant stakeholders.13 Finally, the information about the risk and measures is exchanged between policy makers, municipal health services, hospitals, general practitioners, other organisations and/or healthcare professionals, media, patients and the general public, known as risk communication.14 In summary, when an outbreak occurs, this framework is used to develop an estimate of the risk of the outbreak to human health and safety; to identify control measures and to communicate with stakeholders about the risk and measures.

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The main parties contributing to decision-making in OM are healthcare experts and policy makers (hereafter referred to as experts). Decision-making in OM is defined as the step-by-step process of making choices in shaping risk assessment, risk management and/or risk communication. This process is often executed with minimal direct patient and public input, however, engaging patients and the public in the management of infectious disease outbreaks could be very beneficial.15 16 This benefit of patient and public engagement (PPE) is increasingly recognised in general healthcare and has evolved considerably in past decades. Starting with the Alma Ata Declaration by the WHO in 1978, which included the following statement: ‘The people have the right and duty to participate individually and collectively in the planning and implementation of their health care.’17 Nowadays, integrating the input of patients and the public in healthcare policy is central to numerous health reform agendas.18 For PPE in healthcare policy-making, various arguments can be given. First, the normative argument reflects the legitimacy of the decision-making process. Patients and the public are end-users of healthcare and should have a voice in shaping it. Second, the substantive argument focuses on the experiential knowledge of patients and the public, which can be complementary to expert knowledge. Finally, the instrumental argument refers to the accomplishment of knowledge sharing by engagement and the achievement of social acceptance and avoidance of conflicts.19

In the context of this paper, PPE is broadly defined as the spectrum of activities to integrate the collective values and attitudes of groups of public members who are affected by (including patient groups) or at risk during an outbreak, into the process of decision-making regarding OM. More specifically, engagement can be executed in various levels, with various goals. The International Association for Public Participation’s (IAP2) Spectrum of Public Participation (figure 2) describes five levels of engagement: ‘inform’, ‘consult’, ‘involve’, ‘collaborate’ and ‘empower’. With each level, the impact on decision-making increases.20

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In the context of infectious disease outbreaks, the Ebola virus disease outbreak in West Africa in 2014 clearly demonstrated that the values and perspectives of the affected communities cannot be ignored in managing an outbreak.21 This has become even more apparent during the current COVID-19 pandemic, when public perspectives are necessary to identify and successfully implement feasible and effective OM.22–24 Until now, the public has been engaged in certain aspects of OM, but this has almost always been limited to only execution of measures and gauging knowledge to improve communication efforts.25 26 PPE in decision-making in OM proves to be uncharted territory.

Overall, the integration of collective views from patients and the public in OM may ultimately lead to the development of an innovative, higher-quality policy that is tailored to meet the full range of perspectives present in the diverse population within a country.15 21 27 In this paper, we aim to gain insight into the state of the art of collective PPE in OM decision-making with regard to methods, impact and level of embedment. This study will explore the following research question: How has PPE been incorporated in the decision-making of OM according to available literature, and what are best practices and recommendations for the future?

Methods

An integrative review approach was applied, as it allows for the inclusion of papers with different types of methodology.28 Based on literature, the types of methodology that were expected to dominate this area of research are mainly qualitative or mixed-method approaches.

A comprehensive systematic search was performed on 7 July 2020, in collaboration with a medical librarian (LJS) in the following bibliographic databases: PubMed, Embase, APA PsycInfo (via Ebsco), the Web of Science Core Collection and Scopus. The choice for these databases was based on their (bio) medical and social nature and therefore agreement with the review topic. In the search, controlled terms (MeSH in PubMed, Emtree in Embase and APA Thesaurus of Psychological Index Terms in APA PsycInfo), as well as free-text terms were applied. The following terms, including synonyms and closely related words, were used as index terms or free-text words: ‘Public participation’, ‘Patient participation’ and ‘Outbreak’. Search terms expressing ‘Patient or Public participation’ were combined with search terms comprising ‘Outbreak’. ‘Outbreak’ terms consisted of general outbreak terms and specific disease terms known for causing outbreaks, varying in frequency and scale, for example, ‘Zika’, ‘Ebola’ and ‘SARS’, to increase the quality of the search. The search was performed without restrictions on publication year, language or article type. Duplicates were excluded. Online supplemental file 1 contains the full search strategies.

Results

Thirteen records were included, which is displayed in the flowchart (figure 3).

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Discussion

This review describes how PPE in decision-making in OM has been reported in the literature, concluding with observations about best practices.

Overall, there seems to be low embedment of collective level PPE in decision-making in OM as a structural activity. Nevertheless, we observed first and one-off efforts applying PE in decision-making on community practice and national policy. PE seemed useful in developing culturally appropriate strategies. In fact, most outcomes were used in direct community practice or in long-term national policy documents. This reflects, to some extent, the added value of PE in decision-making regarding OM. Moreover, in the included papers, the perspective of the public has been studied only in decision-making in risk management and communication, not in risk assessment. Their perspective was always obtained by a range of qualitative methods in various orders, in which patients were almost never engaged. Overall, we found a lack of rich in-depth description of methods and justification for certain terminology and decisions on methodology. These are very important factors in order to increase the reproducibility of PPE in decision-making in OM.

We have identified a low structural embedment of PE in decision-making in OM on a collective level, while in other types of crises such as natural disasters, higher levels of embedment have been established, through the presence of ongoing engagement platforms with corresponding levels of trust and capacity. Linnel et al (2014) executed a review on successful approaches to public empowerment to enhance crises response abilities, and identified the significance of engagement platforms.49 Loewenson et al (2021) confirmed the importance of establishing social structures, before crises happen, in order to have more proactive and swift community responses. These results were found within context of the execution of the COVID-19 response, not in policy decision-making.50 One important aspect to progress structural PE embedment in decision-making in OM is improvement of both execution and reporting. In our review, relevant information on execution of the engagement process was missing, as well as ethical considerations. Moreover, clear definitions of terminology were lacking. Included papers used the terms ‘engagement’, ‘involvement’, ‘participation’, ‘public’ and ‘community’ interchangeably. This overlap in terms and meanings is apparent in ‘public engagement’ literature and points to the many different contexts, aims and approaches concerning PE (our term of preference).20 51–53 Awareness of this myriad of approaches to shape PE is important and should be considered carefully within the designated context of engagement. We suggest providing the term of preference and a clear definition. Overall, the lack of reporting on engagement process and terms impacts reproducibility and transparency. This subsequently impacts the progress of PE in OM.54

Further investigation of community versus national approaches for PE in OM is necessary. First, the community approach to PE in decision-making in OM seems to have a direct beneficial impact, as outcomes were mostly directly used to shape local OM. This outcome is in line with findings from others, such as Gilmore et al (2020), who reviewed best practices for engagement during epidemic (and COVID-19) responses.50 55 In particular, engaging communities, described as: ‘groups within a parameter of a social boundary or catchment area’, resulted in context-specific and sustainable solutions. For the papers with a national approach, we were unable to identify the applicability of the recommendations. This leaves the question unanswered whether a community or a national approach, or may be a combination, would be best suitable.

In the included papers, PE was incorporated into decision-making about risk management and risk communication of OM, and never in risk assessment. The explanation for under-representation of PE in risk assessment is unknown. It could be due to unsuitability of PE in decisions regarding risk assessment from the perspective of experts, patients and the public because of inaccessibility, competency and appropriateness. When considering the possibilities for PPE in risk assessment, parallels can be drawn to the field of natural disaster management. Crichton et al (1990) constructed the Risk Triangle, which explains the measurement, and therefore management, of a risk within the context of a natural hazard. The Risk Triangle depends on three elements: hazard, vulnerability and exposure.56 Vulnerability is defined by Schneiderbauer et al (2004) as ‘The characteristics of a person or a group in terms of their capacity to anticipate, cope with, resist and recover from the impact of a natural or man-made disaster—noting that vulnerability is made up of many political-institutional, economic and socio-cultural factors’.57 In general, various categories of vulnerable groups are already well known. For COVID-19, these are, for example, patients with a mental illness or children experiencing family violence.58 59 Nevertheless, vulnerability varies greatly based on the type of crisis and local conditions. Patients and the public can provide insight into their respective vulnerability such that risk assessment for a specific situation and population can be fine-tuned.60 Furthermore, views of patients and the public could result in more trustworthy and mutually acceptable risk-based decisions overall.61 To conclude on specific possibilities and impact of PPE in risk assessment, as well as risk communication and management, more research is needed.

In all papers, multiple forms of methodologies were used that facilitated knowledge sharing between stakeholders. This knowledge sharing on OM seems imperative for successful engagement. A few evaluations on the PE process indicated an increased understanding by the participant of the subject at hand and a positive effect on acceptance of the policy. In a handbook of WHO on managing epidemics, establishing a dialogue between stakeholders is highlighted, in order to understand perception and beliefs as a basis for engagement.62 With regard to knowledge sharing and establishing dialogue, we want to highlight the usability of deliberative discussions.63–65 This type of method enriches the participants’ understanding of an issue at hand as well as their own and alternative perspectives. Moreover, there is room for different aspects such as presentations, plenary discussions, small-group discussions and voting rounds.66 67 Another possible method we want to highlight is participatory value evaluation (PVE), as discussed by Mouter et al (2020), which enables a greater reach. In this study (published after our search), PVE was executed during the COVID-19 pandemic in the Netherlands, reaching about 30 000 citizens. Preferences of citizens on pandemic management were gauged, and information about consequences of their theoretical decisions was provided.68

We found that in all but one of the included papers, the patient perspective was missing. This might be unfortunate, as patients have experiential knowledge about the disease itself, its therapy and general restriction measures. Their input could be valuable to improve therapy and restriction measures, corresponding communication and information efforts, and patient behaviour and compliance.69 70

The lack of patient perspective might have been caused by some of the methodological choices in this review. Our focus was on engagement on a collective level, whereas, for example, the WHO (2013) advocates for a focus on micro-level engagement with regard to patient engagement in healthcare.71 While recognising the importance of engagement on an individual level and possibilities here-in, this is beyond the scope of the current paper.

This review has some limitations. Sometimes it was difficult during screening to assess whether engagement was executed in decision-making or only in execution of control measures or communication efforts. To minimise errors, this criterion was clarified with examples, and an extra independent check was done. Furthermore, for some papers, it was difficult to assess whether the outbreak situation corresponded with an endemic situation or not. Some parts of the screening, such as title/abstract and other sources, were done by one researcher. Bias by partly solo-screening could have resulted in exclusion of relevant records. Other limitations are expected with regard to the search strategy. We included specific infectious disease outbreaks in our search, chosen due to notoriety and scale. By including not all types of infections, engagement efforts might have been overlooked. Likewise for papers in other languages than English or Dutch. Furthermore, by only focusing on broad engagement terms or collective engagement, structural forms of engagement on an individual level could have been overlooked. As stated before, this would mostly have consequences for patient engagement. We have made clear that our conclusions on structural embedment only apply for the collective level. Moreover, it is possible that the structural forms of PPE are already existent in practice but merely not detectable in literature, or not yet available due to the ongoing status of some outbreaks, with as most obvious example the COVID-19 pandemic.

Lastly, we want to acknowledge the complexity of PPE and myriad of terminology. The search was set up as broad as possible, in order to capture the maximum amount of relevant literature. However, we are aware that potentially relevant engagement efforts have been missed and accept that we may not have a complete picture of all approaches of PPE in decision-making regarding OM globally.

Conclusion

We want to formulate several recommendations for future efforts based on our results. The use of deliberative discussions, such as forums, seems promising, feasible and delivers interesting results which can be used in shaping decision-making in OM on a collective level. It is of great importance that evaluations are more frequently conducted. These evaluations not only gauge the perspective of the public on OM and the process of engagement, but also help to assess its impact. However, the exact impact of PE in OM remains difficult to assess, which makes it a valuable focus for future research. More research and clarity on the exact impact of PPE in decision-making in OM could translate into agenda-setting and ultimately even global guidelines. As in current guidelines, there is a focus on detection, mitigation and delivery or transfer of information during outbreaks. Besides, PPE is often viewed as a means to increase acceptance of measures, whereas it could be much more, as explained in the introduction.

Furthermore, we want to highly recommend better reporting, and more awareness on ethical aspects. It would also be interesting to study the possibilities to develop long-term relationships with communities to possibly increase the level of structural embedment of engagement in OM.

Overall, it has become apparent that PE in decision-making in OM on a collective level can be improved with respect to structural embedment, rigour of conduct and specification of terms and definitions. In this review, we have identified and reported these specific aspects of improvement as accurately as possible, in order to take a step forward and advocate for more PPE in decision-making in OM. Altogether, we strongly believe that it could result in improved legitimacy, quality and effectiveness of OM.