https://orcid.org/0000-0002-9928-540X
ABSTRACT
Responses to COVID-19 have included top-down, command-and-control measures, laissez-faire approaches, and bottom-up, community-driven solidarity and support, reflecting long-standing contradictions around how people and populations are imagined in public health—as a ‘problem’ to be managed, as ‘free agents’ who make their own choices, or as a potential ‘solution’ to be engaged and empowered for comprehensive public health. In this rapid review, we examine community-engaged responses that move beyond risk communication and instead meaningfully integrate communities into decision-making and multi-sectoral action on various dimensions of the response to COVID-19. Based on a rapid, global review of 42 case studies of diverse forms of substantive community engagement in response to COVID-19, this paper identifies promising models of effective community-engaged responses and highlights the factors enabling or disabling these responses. The paper reflects on the ways in which these community-engaged responses contribute to comprehensive approaches and address social determinants and rights, within dynamics of relational power and inequality, and how they are sometimes able to take advantage of the ruptures and uncertainties of a new pandemic to refashion some of these dynamics.
Introduction
The responses to COVID-19 have brought out the many facets of public health – from over-centralised command-and-control measures, sometimes militarised, to bottom-up community driven support, and some that combine both. The spectrum reflects long-standing tensions in public health between biosecurity- and biomedical-focused approaches that objectify people as ‘the problem’ and participatory, people-centred approaches, where people are subjects in their lives and play a critical role in determining and taking action (Loewenson et al., Citation2020a).
Social participation in health refers to people’s individual and collective power and involvement in the conditions, decisions and actions that affect their health and health services. The term ‘community’ is used to refer to people living and interacting in particular areas or with common or shared interests, while noting the social diversity that exists within communities (Loewenson, Citation2016). Reviews identify that the level of engagement may vary from information sharing to forms of self-determined citizen control. It may be initiated from within communities or by outside institutions, take place within spaces that are formal, informal, invited or claimed, and be transient or sustained (Gaventa & Barrett, Citation2010; Loewenson, Citation2016; Loewenson et al., Citation2017). Community engagement in health is as much rooted in socio-political values, cultures and contexts as in the utilitarian benefits it brings to health systems, including in public information, in assessment of health needs, health planning and review, design and delivery of services and in budget and policy formulation (Cornwall, Citation2008; George et al., Citation2015; Loewenson, Citation2016; Mittler et al., Citation2013). The nature and forms of participation reflect the different rights, capacities, interests of and power relations between those involved, while socio-political, legal, and institutional factors, resources and processes enable or impede the practice and its benefit for communities and systems (Cornwall, Citation2008; Gaventa & Barrett, Citation2010; George et al., Citation2015).
Marston et al. (Citation2020) observe ‘Pandemic responses, by contrast, have largely involved governments telling communities what to do, seemingly with minimal community input’ (p. 1676). Yet with effective treatments and vaccines not yet widely available at population level at time of writing, and with the impact of vaccines on transmission unclear, many public health measures are still social or behavioural, calling for public knowledge and appreciation of realities that are argued to be best understood by the communities who live them. Combined, experiences with Ebola in Sierra Leone and Democratic Republic of Congo, with HIV in Zimbabwe and with SARS in Hong Kong point to the key role community and civil society actors play in designing contextually appropriate plans, in early case detection and contact tracing, reaching marginalised groups, overcoming stigma and taking preventive action (Anoko et al., Citation2020; Hayllar, Citation2007; Johnson & Goronga, Citation2020; Tiwari et al., Citation2020). In past pandemic responses community leaders and members have helped to overcome misinformation and stigma, to support adherence to and uptake of public health measures, and to provide social and material support to culturally appropriate, innovative actions (Anoko et al., Citation2020; Bhattacharyya et al., Citation2020; Hayllar, Citation2007; IFRC, Citation2017; Marston et al., Citation2020).
At the other end of the spectrum, laissez faire approaches and inadequate state support can lead to communities taking on unfair burdens. Community engagement requires time, empathy, communication, resources, mechanisms and measures that take into account socio-cultural diversity and that build confidence that community evidence is being heard and used. Yet pandemic responses often inadequately integrate social evidence or apply the time and resources for effective engagement (Anoko et al., Citation2020; Hayllar, Citation2007; Johnson & Goronga, Citation2020). How well community culture, co-operation, and understanding are engaged is argued to affect the trajectory of the pandemic and the public trust and confidence needed for people’s adherence to public health measures, as well as to underlie the success of other control measures (Bhaduri, Citation2020; Tiwari et al., Citation2020).
COVID-19 offers an opportunity to more deeply understand both these features of community engagement in pandemics and what they teach us about their role in advancing a more comprehensive public health approach. In the initial phases of the COVID-19 pandemic, there were largely, albeit with some notable exceptions, biosecurity-focused, authoritarian responses over populations in some countries, and laissez fare responses leaving people to make individual choices in others (Bhaduri, Citation2020; Corburn et al., Citation2020; Loewenson et al., Citation2020a). In such approaches communities are seen as targets of risk communication and sources of data for decisions made elsewhere, with superficial forms of consultation. In contrast, in some countries or local settings, affected communities and their organisations have played more substantive, meaningful roles in planning and reviewing responses, and have been involved in key measures for prevention, care and social protection (Bhaduri, Citation2020; Duque Franco et al., Citation2020; Scheepers et al., Citation2020).
Public health decisions require evidence from a range of disciplines, sciences, experiences and perspectives from all levels, including from communities, using reflexive methods for learning from action and co-production of new knowledge. This is particularly important for the adaptive learning needed in a new pandemic (Loewenson et al., Citation2020a; Tembo et al., Citation2021), In this paper we provide, through a rapid global review of 42 case studies, evidence on diverse forms of substantive community engagement in the response to COVID-19, highlighting the factors that enable or disable these responses. We explore the learning from these experiences for opportunities to take advantage of the ruptures of this moment to refashion new forms of self-determination, participation and comprehensive public health, where those affected are subjects and partners in and not objects of responses.
Methods
In August–September 2020, in the Regional Network for Equity in Health in east and southern Africa (EQUINET), structured case study evidence was gathered on meaningful engagement and involvement of affected communities in the response to COVID-19. Thirteen case studies were obtained from an open call and 29 from desk review.
Case studies from both sources were eligible for inclusion if they reported on COVID-19 community engagement efforts led by non-state organisations, communities or with governments that related to aspects of prevention, care, social protection and /or co-determination of responses. Community engagement that only involved risk communication was excluded.
Thirteen detailed individual case studies were prepared by volunteering authors responding to an open call on EQUINET’s pra4equity list and the Health Systems Global SHAPES list, both of which include several hundred people working on social dimensions of health. The call provided the objectives and scope of the case studies. Of the 22 that responded to the call, the 13 included were all those that met the inclusion criteria above, that had sufficient published evidence on the case and where the case study would be written or reviewed by organisations directly involved in the work.
A desk review was implemented to select and prepare a further 29 brief case studies. To identify these case studies, we searched the peer-reviewed literature using Google Scholar and the SocArxiv preprint server, grey literature from state and non-state sources, newspaper and magazine articles, blog posts, and websites. We searched using phrases that combined ‘community’ with terms like ‘engagement’, ‘participation’, ‘consultation’, ‘involvement’ and ‘empowerment’. We also reviewed online compendia of resources on COVID-19 and community engagement as well as relevant email discussion lists. We searched primarily in English but also identified case studies in Latin America and Europe in French, Italian and Spanish to expand our coverage. From a list of 140 eligible sources, we purposively sampled 29 case studies for analysis and synthesis based on the inclusion criteria noted above and an aim to include a diverse mix of countries and regions, types of community engagement, key actors and size of initiative.
A common framework for data extraction was used in each of the 42 case studies to organise evidence on location, context, social settings and groups involved, the general COVID-19 response and features and impacts of the community engagement and action. Where the original sources provided evidence on factors that enabled or disabled the experience, these insights were included.
Since most of our sources did not contain extensive descriptions of engagement activities, actors, and contexts, we were not able to use a more comprehensive comparative case study approach. Instead, a thematic analysis was implemented across the 42 case studies to draw out key themes found across multiple case studies related to the forms and features of community engagement and to identify enabling or disabling factors. Separate, more detailed reporting provides the more comprehensive evidence captured on each case study included in the thematic analysis, together with further direct voice of the community organisations, visual evidence and hyperlinks to the experiences and to the lead organisations implementing the work (Loewenson et al., Citation2020b). The findings of this thematic analysis were initially developed by RL, CC, EN, and NR and then reviewed and validated in a remote meeting of all co-authors in September 2020.
This rapid review is not intended to be an exhaustive or in-depth systematic review, and we note the complex and dynamic nature of the content. The scope of case studies was limited by resources and time. With a rapidly unfolding pandemic, most of the cases included had not fully implemented or published a formal evaluation, and we understand that the available reporting may not be free of a positive bias. Any documented challenges, where noted, were included. Notwithstanding these limitations, we consider that the information on the scope and organisation of the work outlined in the case studies provide important empirical information, about the nature and scope of meaningful community engagement in the pandemic. The grounded thematic analysis draws findings and conclusions draw from multiple case study examples to identify possible forms of community engagement that contribute to comprehensive public health and important challenges and implementation considerations for this kind of work.
Results: How have communities responded to COVID-19?
The case studies were originally organised by the area of response to COVID-19, viz: in relation to planning and strategic review; prevention; care; and wider social protection. summarises the 42 case studies and their key characteristics, highlighting the range of participatory, multi-sectoral, solidarity- and equity- driven public health interventions that extend beyond the usual risk communication approaches. This section describes key features of community responses to the pandemic from the thematic analysis across all cases. While we use the past tense, given the use of published evidence, most interventions were ongoing at the time of writing.
Table 1. Characteristics of the 42 case studies.
Co-producing comprehensive responses
Beyond information sharing, community support for symptom surveillance and uptake of testing and contact tracing has contributed to prevention of COVID-19. In Mangochi district, Malawi and in southern Mozambique, community leaders and members supported the local district administration to engage migrants returning from work in South Africa, to improve their uptake of testing and contact tracing, and to distribute food and other support to them and their families during quarantines to facilitate adherence to prevention measures (Black, Citation2020; Magombo, Citation2020). In São Paulo, Brazil, the Sapopemba Life Brigade, a local social movement, aimed to combat the pandemic by defending rights, demanding accountability and supporting the state. Building on a social movement history of organising around local wellbeing, they held remote meetings with residents on prevention, promotion and care in the district, to bring issues raised to local authorities. Brigade members surveyed environments like local markets for COVID-19 transmission risks and used the evidence to suggest ways of re-organising these markets to reduce risk (Coelho & Szabzon, Citation2020). In other areas, community representatives participated in discussions in local committees and councils on the timing of lifting of lockdowns and in monitoring the implementation of what was agreed (Loewenson et al., Citation2020b).
In some settings, communities intervened around care. For example, doctors and volunteers in Kolkata, West Bengal in India, many themselves survivors or close family of survivors of the pandemic, self-organised as a COVID-19 Care Network. They used telemedicine to provide guidance and counselling on social and medical issues and organised webinars and awareness campaigns to allay anxiety and stigma related to COVID-19 (Banka, Citation2020). The network monitored people in self isolation and arranged blood donations. The network registered with the government to enable effective referrals to public services. In northwest Syria, the ongoing civil war has undermined the capacity and resources of the health system to provide effective care. In response to this situation, local Syrian actors created a ‘Volunteers against Corona’ campaign that organised people into technical teams and neighborhood committees to raise awareness, to support disinfection campaigns and to refer community members to medical care. An online platform was set up to support initial self-health assessments to reduce pressure on the health system, liaising with the local health authority in the area, while Syrian medical diaspora members have supported local health workers with information and training (Ekzayez et al., Citation2020). In the Paraisópolis favela (slum) in São Paulo, ‘block presidents’ each monitored the health of 50 families, locally trained volunteers provided emergency care and residents who needed care were supported through telemedicine (Osborn, Citation2020). In other settings, community and civil society organisations working with professional networks have organised blood donations, quarantine facilities and emergency transport (Loewenson et al., Citation2020b).
Community organisations have also supported social protection, such as by preparing and providing food, blankets, winter clothes, sanitary napkins and other inputs for particular groups and families in quarantine or in need (Coelho & Szabzon, Citation2020; Khanna, Citation2020). For example, Community Action Networks (CANs) in South Africa organised volunteers to provide local community kitchens, care packs for homeless people, blankets and winter clothing, and regular WhatsApp or online contact with people in need (Scheepers et al., Citation2020). The role of community health workers in outreach and linking communities to health and social care is widely documented (Perry, Citation2020; WHO, Citation2018). Less well documented are these roles in high income settings, such as the ‘doulas’ in Syracuse, New York, who, as non-medical support persons in the community, provide support before, during, and after childbirth. With COVID-19 restrictions, they continued this support virtually (Rivera, Citation2020). Across these examples, the understanding that such embedded organisations and volunteers have of local sensitivities was reported to enable care and support to be done in a way that avoids stigma.
Many of the interventions also explicitly recognised the psychosocial dimension of the pandemic. In Burkina Faso, for example, Cercle d ‘Etude, de Recherche et de Formation Islamique (CERFI), a local faith-based organisation for the Muslim community, worked with the government to frame and explain public health measures for COVID-19 in a manner that would be credible to the religious community, facilitating their implementation (Bougoum, Citation2020; Lefaso.net, Citation2020). The CANs in South Africa, the Life Brigades in Brazil or the Care Networks in India noted earlier used social media and local languages to discuss mental health and social needs. The Kudumbashree ‘Snehitha’ gender help-desks in all Kerala districts offered short stay facilities and counselling support from professional community counsellors and services, covering women and children facing domestic violence and other social challenges raised by the pandemic and the responses to it, such as lockdowns (Kudumbashree, Citation2020). In Yale, USA, the New Haven Health System and local school children implemented a ‘Cards from the Community’ programme sending empathic support through digitised cards for socially isolated and elderly people, including those in hospital (Branson, Citation2020). Italian youth supported by the Forum of European Muslim Youth and Student Organisations launched a campaign with the hashtag #outbreakofgenerosity that gave youth across Europe online ideas and tools to provide support in local areas, such as shopping, delivering food, sewing masks and leaving messages of care and support for individuals in need and households with sick family members (Wickramanayake, Citation2020).
These efforts were not without challenges and reversals. They were, however, also consistently solution-focused and many took a comprehensive, multi-dimensional approach to the risk and vulnerability posed by COVID-19. They integrated social dimensions, so that rather than treating people as objects to be managed, those involved are subjects, full of life, with rights, ideas and rich experience.
Fostering capabilities, equity and inclusion
There were some common patterns across these efforts in their principles, approach and in the resources they drew on.
While some of the case study experiences began after the pandemic, the majority had a history of investment in social structures, capacities, organisation and relationships long before the pandemic appeared, such as those raised earlier in Brazil, India, and Burkina Faso. Community and civil society organisations that had this longer history of work building capacities, trust, shared principles and leadership in the community seem to have been ‘faster out of the gate’ in their responses, with these prior efforts enabling the strategic and creative thinking needed for proactive, adaptive, deeper and more sustained community responses to the new challenges posed in the unpredictable and dynamic situation generated by the pandemic. The more holistic their lens and their responsiveness to community priorities, the more the social organisations appeared to be able to take on the mix of issues raised by COVID-19 for different groups (Loewenson et al., Citation2020b).
The interventions generally covered all people in local areas, but many gave particular attention to socio-economically disadvantaged groups within communities. Self-help groups ensured that support reached Dalits (Scheduled Castes), landless and displaced people in Dewas, Madhya Pradesh, while SAHAJ, a local non-state organisation in Vadodara, India, involved adolescent girls in making personal protective equipment (PPE) for local use, and ensured their access to sanitary towels at a time when supply chains were disrupted (Chhotray, Citation2007; Khanna, Citation2020). In these actions, local networks helped to link those with greater need to more powerful professionals, producers, opinion leaders and government workers.
Participatory processes, in local languages, were used to create more inclusive spaces where diverse sections of communities found a voice to express their different needs, and where people could confront existing social hierarchies, such as in Kerala’s Kudumbashrees or the self-help group networks in Dewa noted above. Where physical distancing and lockdowns were in place, they used social media to link with local community nodes or created accessible apps to engage people, discussed further later. This enabled their unique needs to not be crowded out by concerns of more powerful groups and located often marginalised groups as actors, not victims.
While COVID-19 has often intensified socio-economic inequalities across high- and low-income settings, the interventions focus on people as bringing assets and capabilities to collective processes. Life Brigade community members in São Paulo were researchers in the risk surveys described earlier. In Cameroon, Mboalab, a small open science initiative based in Yaoundé, has engaged and educated community members as researchers to develop collaborative solutions to local problems. During the pandemic, these ‘citizen scientists’ produced appropriate open source technologies for PPE and hand sanitiser (Fadanka, Citation2020). In Taiwan, g0v, a decentralised, community-focused initiative, has in the past networked over 4000 community participants in public interest projects. As a quick response to scarcities generated by the pandemic, this network of local residents crowd-sourced and continually updated information in an online map of convenience stores that had masks in stock to enable access (Jaffe, Citation2020). Across these experiences, people were engaged not just for what they benefited individually, but for what they contributed collectively.
Forging new roles and relationships within and beyond communities
The various community efforts generated or strengthened roles and relationships that were critical to achieve their goals. The initiatives raised the profile of productive capacities and economic interactions that were previously ignored, or even suppressed.
Across the case studies, community members took on new roles, especially where there was prior social investment in the capacities for this. Community volunteers were trained to produce health technologies such as face masks, hand sanitizers, visors, suits and gloves for local service personnel and communities in Cameroon, in Vadodara, India and in South Africa, as described earlier. In Yemen, for example, a prolonged war meant that many health workers lacked PPE. Female volunteers in Yemen’s rural Mabyan district organised and were trained to produce face masks and suits to accredited standards for staff of six medical centres (UNDP, Citation2020).
As a response to the impact of pandemic-related lockdowns, new relationships were built between small scale farmers and households to facilitate direct household food deliveries, by FoodFlow in South Africa (Buxton, Citation2020), and in Satara India (Pol, Citation2020). These initiatives guaranteed farmers a market for their produce and met the nutritional requirement of the urban residents. In Satara, eliminating the ‘middlemen’ meant that farmers received better returns and households obtained quality foods at lower prices (Pol, Citation2020). From South Africa’s CANs to Kerala’s Kudumbashrees, links were facilitated between local producers and hotels and community members facing challenges in accessing food, organising food provision through communal gardens, community kitchens and ‘people’s’ restaurants (Krishna, Citation2020).
Alliances between community members, civil society and activist professionals helped to lever relationships with more powerful actors or with the state to address key needs, such as in the care and support initiatives discussed earlier, or in supporting claims on other sectors, as for example in the efforts described below on prisoner rights in Ivory Coast. Local engineers and scientists worked with communities to build their scientific capacity and to co-produce technology, recognising their role as ‘citizen scientists’, such as raised earlier in Mboalab in Cameroon.
In some cases, the links extended to international organisations, such as with the International Organisation on Migration for migrant protection in Mozambique and Malawi, or with diaspora communities to support care in Northwest Syria, previously described. In Ivory Coast, L'Observatoire Ivoirien des Droits de l'Homme (OIDH) as local human rights organisation profiled and protected the rights and public health of the prison population through sustained interactions with authorities and through public outreach. Having international human rights positions articulated by the UN Office of the High Commissioner for Human Rights was important to support these negotiations (Francis, Citation2020). The Philippines Homeless People’s Federation organised support for homeless people through a network of local community leaders and partners. They set up community kitchens and distributed essentials, food and masks, and provided relief income for homeless people that were not registered in the government scheme. As a local federation of highly insecure people, their link with the International Slum Dwellers International and the Asian Coalition for Housing Rights provided critical funds for these interventions (Carampatana & Tuazon, Citation2020).
Whatever their form, the relationships described in these case studies share common features of solidarity transfers and common cause support, significantly different from the top-down application of predetermined funding and technical support found in some interactions with community levels on COVID-19. International and diaspora alliances were often important for more marginal groups like migrants, or to enable voice, agency and support in conflict areas, or where resources and political space may be more limited.
Using technology to support collective responses
The physical distancing and lockdowns generated by COVID-19 have raised new challenges for community organising, particularly in low income communities where social interactions are often face to face and collective, and where digital access may be more limited. Nevertheless, the experiences also show the creative use of local apps and widely-used social media, such as WhatsApp to organise responses, to map real-time availability of face masks in shops in gOv in Taiwan, noted earlier; or to report problems and outbreaks to authorities, such as through a locally developed mobile phone app sunucity in Dakar, Senegal (Sunucity, Citation2020). As an online platform, the GEO Indigenous Hackathon was able to gather indigenous groups from different countries to design culturally appropriate technologies for COVID-19, such as culturally-relevant maps for the Samburu community in northern Kenya to manage livestock sales during lockdowns; apps enabling members of the Lakota Sioux Nation to share experiences of COVID-19; or for the Quilombola community in Brazil to create an online visualisation of socioeconomic and health data that they had been collecting since 2017 (GEO, Citation2020).
Digital innovations have enabled online learning materials for schoolchildren in Kerala and links between farmers and households; or between school children and hospital patients, as described earlier. In the Gao region of Mali, a network of local radio stations, URTEL, enabled information flow to and from communities in conflict areas not easily reached by others (MINUSMA, Citation2020). In Utah, a COVID-19 Digital Collection used open crowdsourcing to present digital photos, stories and oral histories from local people, giving communities a voice on their experiences of the pandemic (Neatrour et al., Citation2020). Online platforms have enabled new connections across countries, such as the GEO Indigenous Hackathon or the ‘#outbreakofgenerosity’ campaign described earlier, or Frena La Curva (‘Slow the Curve’) in Latin America, a citizen platform where volunteers, entrepreneurs, activists and social organisations can organise social responses to COVID-19 (Lungati, Citation2020).
These tools enable community exchange and collective problem solving, rather than a means for simply extracting community information. The apps and technologies in the case studies are generally open source technologies offered as a public good, often by local developers, with intent to service community needs. Notwithstanding the spread of smartphones and efforts to design and use accessible platforms, there are still cost and access barriers to their use. The open data and open source protocols that support access to these innovations in marginalised communities stands in contrast to the often costly, patent-protections that impede access, innovation and local production of technology, including of essential health products (Loewenson, Citation2020; UNAIDS, Citation2020).
In different relationships with the state
An interaction with the state was present to different degrees in all the case studies. It took different forms, linked to context and how that was read politically by the social organisations. More distrusting and conflictual relations with the state have been stimulated by centralised, disorganised, top-down government management of COVID-19, especially when measures neglect local realities and do not provide adequate social protection. The use of coercive measures by security forces to enforce compliance has led to rights violations and provoked social resistance (Chukunzira, Citation2020; Loewenson et al., Citation2020a; UNAIDS, Citation2020). The interaction with states draws on ideologies that go beyond COVID-19. For example, one strand of community engagement was explicitly independent of or even anti-state, rejecting class interests in the neoliberal state. The ‘People’s Solidarity Brigades’, for example, organised mutual aid ‘from below’, networking self-organised collectives of anti-racist and anti-fascist activists in cities across Europe to provide social support that was explicitly independent of state and political institutions (Montréal Antifasciste, Citation2020).
In most case studies, however, collaborative relations with the state and state support for multi-sectoral approaches and collaborative decision-making appeared to contribute to more positive co-operation and engagement. While the engagement on prisoners’ rights in Ivory Coast noted earlier was with national government, the collaborative spaces for joint work and decision-making were more often achieved with city and local governments, where the case studies provided ideas, evidence, outreach and actions that supported effective responses and governance. This collaboration appeared to be enabled where state capacities were decentralised, and where local public systems had resources and capacities to be responsive to communities.
In Brazil, Ivory Coast, South Africa, Philippines and elsewhere, self-organisation in communities, while often a response to deprivation or deficits, was explicitly noted as not substituting state duties. Community dialogue with the state and social actions were used to hold the state accountable for its duties, to create pressure on the state to allocate resources to underfunded needs and to advocate for recognition of disadvantaged groups, such as prisoners or homeless people. Collaboration with the state also did not mean being dominated by the state. The balance between collaborative and adversarial relationships was thus a strategic and often political decision. In the Sapopemba Life Brigade experience in Brazil, within a productive collaboration on COVID-19, community organisation and a more forceful engagement on rights and needs was observed to be what makes the state move (Coelho & Szabzon, Citation2020).
Discussion: COVID-19 as danger or opportunity for comprehensive, participatory approaches?
The Chinese word for ‘crisis’ consists of two characters: ‘wei ji’. ‘Wei’ stands for danger and ‘ji’ for opportunity. This Chinese word reflects the tensions in a pandemic that has brought both danger and opportunity in the wider political economy, for individual and corporate interests, wealth and executive power, but also for collective interests, public goods, holistic approaches and socio- economic rights and justice.
Within this context, profiling communities as silent, fearful victims can play into people’s subjugation. Atomising people into isolated units can silence any collective questioning of responses and promote individualised forms of self-protection. These case studies reflect the opposite, a reclaiming of agency and collective interests. They show a compassionate, justice and rights driven face of society. The ‘outbreak of generosity’ campaign by young people in Europe expresses it well, as a deliberate intention to communicate solidarity. This kindness has often been hidden by the physical isolation and distancing in COVID-19 and the use of war rhetoric in authoritarian responses that have often treated people as passive objects, or problems to control (Rohela et al., Citation2020). The case studies show that a compassionate society is not contradictory to and in fact enhances public health.
The uncertainty generated by a new pandemic appears to have opened an opportunity for new ways of thinking and new, multi-sectoral approaches. With traditional sources of expertise debating between themselves on the best course of action, people have had to take action on their realities. As reflected in the case studies, some actions have aimed at coping, and some have asserted rights and duties, acting in innovative ways on multiple pathways to address social needs and engaging on production relations and services that were generating inequity, even before the pandemic. They come from countries north and south at all income levels, with health systems of different strength, and show a contribution of meaningful participation of communities in all such contexts.
The actions in the case studies address determinants of health and pandemic impacts that extend well beyond a prevalent disease and biosecurity-focused practice that often fails to address the mental, physical, social and ecological conditions that affect risk and vulnerability, or that promote wellbeing. The experiences resonate with calls for a more comprehensive understanding of public health (WHO, Citation2008; Waitzkin et al., Citation2001; Loewenson et al., Citation2020a). In contrast to a disaster and ‘emergency’ framing of the pandemic that renders people fearful and reliant on a response narrowly centred around executive and institutional management, the experiences in the paper include socially motivated responses that seek to understand lived realities and that promote health by acting on multiple pathways, rights and duties covering socio-cultural, political, and economic domains. This reflects a more comprehensive public health in practice. They offer decentralised, self-determined and collective actions in public health, addressing the real challenges communities face from pandemics, rather than a top-down, bureaucratic and one-size-fits-all approach.
Their promotion of equity, rights, solidarity and collective interests resonate with calls for collective interests and solidarity to inform responses to pandemics, for essential health technologies like vaccines to be global public goods, and for pooled patenting to enable distributed production of these technologies (Lee & Yang, Citation2020; Loewenson, Citation2020). They demonstrate, often at local level, the collective interests, protection of rights, co-operation and solidarity articulated as essential to meet other major public health challenges, such as climate change (Whitmee et al., Citation2015; WHO, Citation2016).
The cases point to the relationship between citizens and state as a critical determinant of such a comprehensive public response. While a decentralised state appears to be important for this, it is critically one that has the local capabilities and means to organise multi-sectoral and multidimensional responses at the local level, that enables voice and that is responsive and accountable to communities, particularly the least powerful in society. The case studies also raise the risk that communities face in organising in societies where the underlying political economy extracts resources and generates social deficits, by taking on burdens and responsibilities that should be ensured or delivered by the state. They point to the need for actions in those contexts to lever these responsibilities from state and private sector and not to take them over.
There are challenges and limitations in investing in meaningful forms of community organisation for self-determined engagement on COVID-19, especially as cases escalate. However, the experiences reviewed in this paper affirm the opportunities and gains in doing so. We would argue that co-production and co-determination with affected communities are not an optional ‘add-on’ to COVID-19 responses. They are fundamental to a successful response in all countries.
The case study experiences do raise questions about how these forms of response at the community level will change, be reinforced, incentivised or suppressed over time. What innovations will languish or be co-opted, and what forms of action, relationship and thought will persist? How far will this thinking and action from lived experience and knowledge within communities be heard and respectfully integrated within a world of competing ideas and diverse calls within regions and at global level? What will provide the tipping point driving the more comprehensive, social determinants, participatory and justice-driven public health reflected in these experiences and a recognition that this cannot be done without more meaningful community engagement?
Whatever the answers to these questions, it is apparent that the current situation is one that reflects the dialectic vision of ‘crisis’ raised earlier, where the challenges presented by the pandemic are creating demand and space for new thinking, relationships and action. In many settings communities are rising to that demand. It has stimulated new ways of developing and using technology and different forms of interaction between consumers and producers, between state, civil society and others and between different forms of knowledge. The case studies show inspiring ways in which communities and their organisations and partners have used this space to build on experience and to innovate, with positive benefit for often disadvantaged communities. This huge mobilisation of affirmative community effort and creativity and the vision it portrays of ‘another possible world’ needs to be recognised in the story of the 2020 COVID-19 pandemic.
Acknowledgements
We acknowledge the contribution to case study work by Ujjayinee Aich; Priya Tiwari, Yaya Traoré, Coulibaly Soumaila, Moussa Sanogo and Sam Chaikosa. We acknowledge all the organisations, people and communities doing the inspiring work reported.
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References
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