Bottom-up citizen engagement for health emergency and disaster risk management: directions since COVID-19

Abstract

The COVID-19 pandemic has shown how syndemics and protracted crises increase the vulnerability of communities facing concurrent, cascading risks and complex secondary events that aggravate health risks and underlying burdens of infectious and non-communicable diseases.1Singer M Bulled N Ostrach B Mendenhall E Syndemics and the biosoical concepts of health.Lancet. 2017; 389: 941-950Summary Full Text Full Text PDF PubMed Scopus (588) Google Scholar, 2Chan EYY Dubois C Fong AHY et al.Reflection of challenges and opportunities within the Covid-19 pandemic to include biological hazards into DRR planning.Int J Environ Res Public Health. 2021; 181614Crossref PubMed Scopus (4) Google Scholar Epidemics start and end in communities, where citizens are often the first to observe changes in the environment and in animal health, and the first to be exposed to new or re-emerging pathogens. Local stakeholders have crucial roles in the prevention and control of disease transmission, and frequently develop systems of appropriate health and social care based on local knowledge. However, current approaches to disaster risk management often do not sufficiently recognise and engage community expertise.2Chan EYY Dubois C Fong AHY et al.Reflection of challenges and opportunities within the Covid-19 pandemic to include biological hazards into DRR planning.Int J Environ Res Public Health. 2021; 181614Crossref PubMed Scopus (4) Google Scholar A combination of whole-of-society, top-down, intermediary, and bottom-up approaches is needed to maximise resources and minimise adverse health impacts in global crises.3Chan EYY Bottom-up disaster resilience.Nat Geosci. 2013; 6: 327-328Crossref Scopus (20) Google Scholar, 4Jalloh MF Nur AA Nur SA et al.Behaviour adoption approaches during public health emergencies: implications for the COVID-19 pandemic and beyond.BMJ Glob Health. 2021; 6e004450Crossref PubMed Scopus (10) Google Scholar Citizen engagement is a cornerstone of the WHO Health Emergency and Disaster Risk Management (Health-EDRM) Framework, an interdisciplinary academic field promoting mechanisms for communities to address needs and strengthen social cohesion by bridging citizen action with top-down approaches.5WHOHealth Emergency and Disaster Risk Management Framework Health Emergency and Disaster Risk Management fact sheets. World Health Organization, Geneva2019https://www.who.int/hac/techguidance/preparedness/health-emergency-and-disaster-risk-management-framework-eng.pdf?ua=1Date accessed: May 21, 2021Google Scholar The 2020 WHO report from the Global Preparedness Monitoring Board also called for engaged citizenship to strengthen the COVID-19 response and prepare for future emergencies.6WHOA world in disorder: Global Preparedness Monitoring Board annual report 2020. World Health Organization, Geneva2020https://apps.who.int/gpmb/annual_report.htmlDate accessed: May 21, 2021Google Scholar On March 31, 2021, WHO convened a global consultation that called attention to the evidence needed to advance citizen engagement and highlighted the importance of trust, agency, social cohesion, and leadership in driving inclusive, citizen-led responses throughout the health emergency cycle.7WHOGlobal consultation on community-centred approaches to health emergencies: progress, gaps and research priorities. World Health Organization, Geneva2021https://www.who.int/publications/m/item/global-consultation-on-community-centred-approaches-to-health-emergencies-progress-gaps-and-research-prioritiesDate accessed: May 31, 2021Google Scholar Biomedically dominated emergency response models typically perceive citizens as “target groups” or “beneficiaries” rather than as participants with agency and the capacities to contribute to prevention, response, research, and data generation.8Nuffield Council on BioethicsResearch in global health emergencies: ethical issues.https://www.nuffieldbioethics.org/publications/research-in-global-health-emergencies/Date: 2020Date accessed: May 21, 2021Google Scholar Efforts have been made to standardise Health-EDRM approaches, facilitate measurement, and establish multilateral collaboration. However, effective citizen engagement and relevant research in extreme global event responses crucially hinge on recognising the legitimacy and value of local knowledge, competencies, systems, and practices across geographical, cultural, gender, and ethnic groups.9Loewenson R Colvin CJ Szabzon F et al.Beyond command and control: a rapid review of meaningful community-engaged responses to COVID-19.Glob Public Health. 2021; (published online March 18.)https://doi.org/10.1080/17441692.2021.1900316Crossref PubMed Scopus (26) Google Scholar During the COVID-19 pandemic, there have been many challenges to ensuring community inclusion. Clinicians have been confronted with difficulties relating to equitable patient management, and fair distribution and access to diagnosis, therapeutics, COVID-19 vaccines, and palliative arrangements.10WHOA coordinated global research roadmap: 2019 novel coronavirus. World Health Organization, Geneva2020https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar Meanwhile policy makers have encountered problems in ensuring inclusive information access and ownership, resource allocation, and prevention frameworks across different age, gender, and population groups within a jurisdiction.2Chan EYY Dubois C Fong AHY et al.Reflection of challenges and opportunities within the Covid-19 pandemic to include biological hazards into DRR planning.Int J Environ Res Public Health. 2021; 181614Crossref PubMed Scopus (4) Google Scholar Researchers have faced challenges in study implementation, equity of participation in research, technical tools needed for digital evidence capturing and evaluation, fair publication opportunities for researchers, and ethics approval that takes into account unique needs and practices within communities.10WHOA coordinated global research roadmap: 2019 novel coronavirus. World Health Organization, Geneva2020https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar Importantly, many communities have struggled to establish inclusive and relevant governance channels that include their unique needs and perspectives. Throughout the COVID-19 pandemic, well intentioned treatment protocols, protection policies, and research projects have had shortcomings in inclusivity, outcome applications, and implications for vulnerable communities. Mechanisms are often not in place to ensure that hard-won research results that reflect citizens' experiences make their way back to bring needed changes to these communities.8Nuffield Council on BioethicsResearch in global health emergencies: ethical issues.https://www.nuffieldbioethics.org/publications/research-in-global-health-emergencies/Date: 2020Date accessed: May 21, 2021Google Scholar There is a need to reconceptualise the evaluation of citizen science for Health-EDRM in an increasingly interconnected and digital landscape.11Tauginienė L Butkevičienė E Vohland K et al.Citizen science in the social sciences and humanities: the power of interdisciplinarity.Palgrave Commun. 2020; (published online May 7.)https://doi.org/10.1057/s41599-020-0471-yCrossref Scopus (49) Google Scholar Health-EDRM responses can be facilitated by strengthening research design and assessments of scientific merit, and streamlining surveillance and data generation throughout all stages of the emergency response cycle (panel).PanelWays to advance bottom-up citizen engagement in health disaster and emergency management programmes, policies, and researchRisk communication•Identify ways to build trust, awareness, and knowledge before, during, and after responses, and address underlying drivers of fear, anxiety, and stigma.10WHOA coordinated global research roadmap: 2019 novel coronavirus. World Health Organization, Geneva2020https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar•Recognise that resource and information channels vary with demographics, acceptability, and access, and tailor communication to participant groups.12WHOAchievements: WHO COVID-19 social science in outbreak response. World Health Organization, Geneva2021https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google ScholarResearch participation•Identify systematic ways to rapidly involve communities in participation, notably clinical research for vaccines and therapeutics.10WHOA coordinated global research roadmap: 2019 novel coronavirus. World Health Organization, Geneva2020https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar, 12WHOAchievements: WHO COVID-19 social science in outbreak response. World Health Organization, Geneva2021https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar•Develop protocols for rapid research ethics review to allow impactful and timely community involvement.8Nuffield Council on BioethicsResearch in global health emergencies: ethical issues.https://www.nuffieldbioethics.org/publications/research-in-global-health-emergencies/Date: 2020Date accessed: May 21, 2021Google Scholar, 12WHOAchievements: WHO COVID-19 social science in outbreak response. World Health Organization, Geneva2021https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google ScholarResearch design•Identify approaches to encourage participation with urbanised, isolated, and mobile populations equitably.8Nuffield Council on BioethicsResearch in global health emergencies: ethical issues.https://www.nuffieldbioethics.org/publications/research-in-global-health-emergencies/Date: 2020Date accessed: May 21, 2021Google Scholar, 12WHOAchievements: WHO COVID-19 social science in outbreak response. World Health Organization, Geneva2021https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar•Capture disaggregated data to understand the complexity of community diversity, particularly in relation to marginalised, vulnerable, and underserved groups.10WHOA coordinated global research roadmap: 2019 novel coronavirus. World Health Organization, Geneva2020https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar, 12WHOAchievements: WHO COVID-19 social science in outbreak response. World Health Organization, Geneva2021https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar•Develop protocols for appropriate research design and outcome evaluation to maximise impact and relevance.10WHOA coordinated global research roadmap: 2019 novel coronavirus. World Health Organization, Geneva2020https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google ScholarKnowledge sharing•Identify relevant channels for dissemination of research learnings into the source community to better understand and scale up effective and empowering innovation among citizens and vulnerable groups.8Nuffield Council on BioethicsResearch in global health emergencies: ethical issues.https://www.nuffieldbioethics.org/publications/research-in-global-health-emergencies/Date: 2020Date accessed: May 21, 2021Google Scholar, 12WHOAchievements: WHO COVID-19 social science in outbreak response. World Health Organization, Geneva2021https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar•Build mechanisms for multidisciplinary partnerships to analyse and share data related to community preparedness, response, and evaluations.8Nuffield Council on BioethicsResearch in global health emergencies: ethical issues.https://www.nuffieldbioethics.org/publications/research-in-global-health-emergencies/Date: 2020Date accessed: May 21, 2021Google Scholar, 12WHOAchievements: WHO COVID-19 social science in outbreak response. World Health Organization, Geneva2021https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar Risk communication •Identify ways to build trust, awareness, and knowledge before, during, and after responses, and address underlying drivers of fear, anxiety, and stigma.10WHOA coordinated global research roadmap: 2019 novel coronavirus. World Health Organization, Geneva2020https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar•Recognise that resource and information channels vary with demographics, acceptability, and access, and tailor communication to participant groups.12WHOAchievements: WHO COVID-19 social science in outbreak response. World Health Organization, Geneva2021https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar Research participation •Identify systematic ways to rapidly involve communities in participation, notably clinical research for vaccines and therapeutics.10WHOA coordinated global research roadmap: 2019 novel coronavirus. World Health Organization, Geneva2020https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar, 12WHOAchievements: WHO COVID-19 social science in outbreak response. World Health Organization, Geneva2021https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar•Develop protocols for rapid research ethics review to allow impactful and timely community involvement.8Nuffield Council on BioethicsResearch in global health emergencies: ethical issues.https://www.nuffieldbioethics.org/publications/research-in-global-health-emergencies/Date: 2020Date accessed: May 21, 2021Google Scholar, 12WHOAchievements: WHO COVID-19 social science in outbreak response. World Health Organization, Geneva2021https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar Research design •Identify approaches to encourage participation with urbanised, isolated, and mobile populations equitably.8Nuffield Council on BioethicsResearch in global health emergencies: ethical issues.https://www.nuffieldbioethics.org/publications/research-in-global-health-emergencies/Date: 2020Date accessed: May 21, 2021Google Scholar, 12WHOAchievements: WHO COVID-19 social science in outbreak response. World Health Organization, Geneva2021https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar•Capture disaggregated data to understand the complexity of community diversity, particularly in relation to marginalised, vulnerable, and underserved groups.10WHOA coordinated global research roadmap: 2019 novel coronavirus. World Health Organization, Geneva2020https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar, 12WHOAchievements: WHO COVID-19 social science in outbreak response. World Health Organization, Geneva2021https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar•Develop protocols for appropriate research design and outcome evaluation to maximise impact and relevance.10WHOA coordinated global research roadmap: 2019 novel coronavirus. World Health Organization, Geneva2020https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar Knowledge sharing •Identify relevant channels for dissemination of research learnings into the source community to better understand and scale up effective and empowering innovation among citizens and vulnerable groups.8Nuffield Council on BioethicsResearch in global health emergencies: ethical issues.https://www.nuffieldbioethics.org/publications/research-in-global-health-emergencies/Date: 2020Date accessed: May 21, 2021Google Scholar, 12WHOAchievements: WHO COVID-19 social science in outbreak response. World Health Organization, Geneva2021https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar•Build mechanisms for multidisciplinary partnerships to analyse and share data related to community preparedness, response, and evaluations.8Nuffield Council on BioethicsResearch in global health emergencies: ethical issues.https://www.nuffieldbioethics.org/publications/research-in-global-health-emergencies/Date: 2020Date accessed: May 21, 2021Google Scholar, 12WHOAchievements: WHO COVID-19 social science in outbreak response. World Health Organization, Geneva2021https://www.who.int/blueprint/priority-diseases/key-action/Coronavirus_Roadmap_V9.pdf?ua=1Date accessed: May 21, 2021Google Scholar Global frameworks, including the Sustainable Development Goals 2015–2030 and the Sendai Framework for Disaster Risk Reduction 2015–2030, emphasise the importance of strengthening citizen engagement and facilitating top-down mechanisms that build citizen resilience. Yet there are insufficient multidisciplinary policy platforms and experience-sharing mechanisms that allow bottom-up, citizen-focused Health-EDRM research to be supported through funding and ethics approval systems beyond academic institutions, to maintain research output accountabilities, to seek citizens' insights into research planning and design, and to ensure that results are appropriately disseminated. Such platforms and mechanisms would allow health and non-health stakeholders to advance health risk awareness among citizens, translate scientific developments and adaptive governance mechanisms into effective health emergency implementation, and build evidence-based systems that are inclusive and empower citizens.13Munene MB Swartling ÅG Thomalla F Adaptive governance as a catalyst for transforming the relationship between development and disaster risk through the Sendai Framework?.Int J Disaster Risk Reduct. 2018; 28: 653-663Crossref Scopus (40) Google Scholar COVID-19 offers an opportunity for front-line researchers and policy makers to rethink and build more equitable global health landscapes and ensure the inclusion of voices of a diverse world. EYYC and NG are the Co-Chairs of the WHO COVID-19 Roadmap Social Sciences in Outbreak Response Working Group. NG reports funding from the European Union's Horizon 2020 research and innovation programme under grant agreement no 101003589 (RECOVER), Wellcome Trust, and UK Foreign, Commonwealth and Development Office (BZR02530), and UK Research and Innovation/National Institute for Health Research 2019-nCoV Rapid Response Call (NIHR200907). JRA is Co-Chair of the Glopid-R Social Science Working Group. The authors declare no other competing interests. The views expressed by the authors do not necessarily reflect the views of WHO, Glopid-R, or Wellcome Trust. We are grateful to the insights of the members of the WHO COVID-19 Roadmap Social Sciences in Outbreak Response Working Group: Kenneth Camargo, Nina Castillo-Carandang, Simone Carter, Phaik Yeong Cheah, Kristy Crooks, Danny de Vries, Alice Desclaux, Jane Duckett, Nicole Errett, Asha George, Tamara Giles-Vernick, David Kaawa-Mafigiri, Chisomo Kalinga, Tang Kun, Melissa Leach, Shelley Lees, Leesa Lin, Lin Lu, Gustavo C Matta, Hayley McGregor, David Napier, Eva Niederberger, Elise Nouvete, Sabina Rashid, Lisa Schwartz, Dayo Spencer-Walters, Jeni Stolow, Beena Thomas, Olivia Tulloch, Eliza Lai Yi Wong, Samuel Yeung Shan Wong, and Eng Kiong Yeoh.