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.
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
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?