Engaging citizens in health risk governance

Viruses and bacteria are not the only ones to spread during an epidemic. Rumours and misinformation can do that too, eventually leading to the constitution of a parallel information system that could undermine the efficacy of the institutional communication. Similar situations often arise in case of contested knowledge or when only few highly technical experts are left dealing with scientific information. Individuals or groups left outside such confined knowledge, often produce their own version of the reality, thus leading to the formation of rumours and false myths, which in turns may cause a loss of confidence in international and national health authorities.

Such a context represents a serious challenge for health institutions and policy-makers, whose aim is to prevent rumours and myths from becoming the main information channel during an epidemic or a pandemic. A way to face such a challenge is through citizen engagement in risk communication and organized health response. An approach that ASSET experts have called Crisis Participatory Governance and flagged as one of their objectives.

The first step in the development of this approach was a review of the literature on research in participatory governance during crisis, including epidemics and pandemics. ASSET experts examined aspects of governance at the local, national and international levels for crisis in general, and related it to infectious disease crisis such as epidemics and pandemics. Four examples – the South Sudan Secession Crisis, the present Ebola epidemic, the 2009 H1N1 pandemic, and 2015 H1N1 outbreak in India – were discussed as case studies.

Allowing citizens to exercise voice and vote; this is the core concept of participatory governance, which in turns leads to the implementation of public policies that produce some sort of changes in citizens' lives. It is, basically, a process of democratization of policy-making that has some relevant benefits: improving service delivery, empowering citizens and reducing government’s monopoly on policy-making.

The success of participatory governance seems to be more linked to democratic practices than to how advanced an economy is. The literature review highlighted the fact that power asymmetries can play a significant role in the emergence of rumours. But most of all, it is a matter of willingness. Of citizens and civil society to participate, and of the political system to include. Bridging the gap between these two elements is a dynamic process that can develop through different, contingent ways. Flexibility is also a key element, since it allows to adapt participatory governance activities to different epidemics and to the targeted community. Moreover, it is important to keep in mind that a crisis is multifaceted and longitudinal phenomenon, which means that effective crisis response, communication and preparation are by no means confined to the actual crisis.

ASSET experts identified four overlapping phases of such a process, the first one being Resilience and sustainability, which must start way before the beginning of an epidemic. In fact, the impact of a crisis can be minimized by building sustainable and resilient systems. This can be done, first of all, by restoring that trust towards states, international institutions and pharmaceutical companies that has been declining over the last years. The following phases are Pre-crisis, in which an immediate treat has been identified and is likely to affect a given society, Crisis, the stage where the difficulty peaks, and Post-crisis, which is much related to the resilience and sustainability phase and primary deals with the learning and evaluation.

Based on this four-steps framework, ASSET experts analysed models and experiences of participatory governance practices in times of crisis. They concluded that participatory governance is particularly important in times of crisis, as people become the centre of both providing aid and receiving it. Their analysis also shows the critical importance of implementing a two-way communication approach and of adapting plans to local conditions through continuous feedback, engaging the public on a day-to-day basis.

MMLAP and other EU Projects

Health system analysis to support capacity development in response to the threat of pandemic influenza in Asia
Making society an active participant in water adaptation to global change
Public Participation in Developing a Common Framework for Assessment and Management of Sustainable Innovation
Engaging all of Europe in shaping a desirable and sustainable future
Expect the unexpected and know how to respond
Driving innovation in crisis management for European resilience
Effective communication in outbreak management: development of an evidence-based tool for Europe
Solutions to improve CBRNe resilience
Network for Communicable Disease Control in Southern Europe and Mediterranean Countries
Developing the framework for an epidemic forecast infrastructure
Strengthening of the national surveillance system for communicable diseases
Surveillance of vaccine preventable hepatitis
European monitoring of excess mortality for public health action
European network for highly infectious disease
Dedicated surveillance network for surveillance and control of vaccine preventable diseases in the EU
Modelling the spread of pandemic influenza and strategies for its containment and mitigation
Cost-effectiveness assessment of european influenza human pandemic alert and response strategies
Bridging the gap between science, stakeholders and policy makers
Promotion of immunization for health professionals in Europe
Towards inclusive research programming for sustainable food innovations
Addressing chronic diseases and healthy ageing across the life cycle
Medical ecosystem – personalized event-based surveillance
Studying the many and varied economic, social, legal and ethical aspects of the recent developments on the Internet, and their consequences for the individual and society at large
Get involved in the responsible marine research and innovation
Knowledge-based policy-making on issues involving science, technology and innovation, mainly based upon the practices in Parliamentary Technology Assessment
Assessment of the current pandemic preparedness and response tools, systems and practice at national, EU and global level in priority areas
Analysis of innovative public engagement tools and instruments for dynamic governance in the field of Science in Society
Public Engagement with Research And Research Engagement with Society
Computing Veracity – the Fourth Challenge of Big Data
Providing infrastructure, co-ordination and integration of existing clinical research networks on epidemics and pandemics
Promote vaccinations among migrant population in Europe
Creating mechanisms for effectively tackling the scientific and technology related challenges faced by society
Improve the quality of indoor air, keeping it free from radon
Improving respect of ethics principles and laws in research and innovation, in line with the evolution of technologies and societal concerns
Investigating how cities in the West securitise against global pandemics
Creating a structured dialogue and mutual learning with citizens and urban actors by setting up National Networks in 10 countries across Europe
Identifying how children can be change agents in the Science and Society relationship
Establishing an open dialogue between stakeholders concerning synthetic biology’s potential benefits and risks
Transparent communication in Epidemics: Learning Lessons from experience, delivering effective Messages, providing Evidence