'We Are Subjects, not Objects in Health': Communities Taking Action on COVID-19

"The challenges presented by the pandemic are creating demand and space for innovation, and in many settings communities are rising to that demand. The mobilization of affirmative community effort and creativity needs to be recognized in the story of the 2020 pandemic."

The 42 case studies included in this document provide evidence of practical and affirmative options of people-centred, participatory forms of community organising and engagement in responding to COVID-19. With the aim of informing and inspiring others, the co-authors, hailing from 9 countries, contributed their experiences - diverse and rooted in widely different contexts and histories, including of socio-political struggle - to the compilation. Funded by the Open Society Foundation (OSF), the compilation was coordinated by the Training and Research Support Centre (TARSC) of EQUINET, the Regional Network on Equity in Health in East and Southern Africa, in collaboration with Shaping health.

Working on social participation or community engagement in health, these organisations share the conviction that participation is integral to health improvement, intrinsic to people's identity, and reflective of values, rights, equity, and social justice. On this view, the lived experience and knowledge of communities, community activism, and leadership are drivers of participatory practice, but also of more holistic approaches to health and health care. TARSC/EQUINET and Shaping health observe that the spread of the COVID-19 pandemic comes at a time when possibilities of and expectations for improved health and access to health care globally coincide with socio-economic inequalities and prejudices that deprive many people of these opportunities for improved health. "People expect to play a role in decisions that affect these opportunities and barriers."

The forms of engagement explored in the document exclude those that solely relate to information outreach or ad hoc community consultation by authorities. Instead, the case studies highlight more meaningful forms of engagement, where those affected can assert their collective realities, experience, and power; where they can collectively act on issues that matter to them; where they can exert influence on actions that affect their wellbeing; and where they can learn from that action. To that end, the case studies are organised into these types of engagement:

• Planning and strategic review of responses directly related to COVID-19 - e.g., carrying out community assessments and using community evidence;
• Community engagement action, collaboration, and co-determination on key elements of prevention - e.g., shielding and supporting vulnerable groups;
• Community engagement, action, collaboration, and co-determination within key elements of care and protection - e.g., conducting outreach to and support for uptake of key COVID-19-related services in key social groups; and
• Community engagement, action, collaboration, and co-determination within key elements of wider social protection - e.g., providing social and mental health support.

The case studies feature a range of participatory, multi-sectoral, solidarity- and equity-driven interventions for public health and wellbeing. Here is a taste of the content:

• They report the creative development and use of social media platforms for action (particularly, WhatsApp) across all areas of response, connecting people within and across communities and countries, giving voice and visibility to community experiences, and linking people to key resources and services. They show the role of an information and communication technology (ICT) tool that supports problem solving and expression of marginalised voices. However, affordable digital access continues to be a challenge in many communities.
• On the other hand, simple tools, norms, and standards, as well as open data, can facilitate creative community engagement. For example, activists scientists who see community knowledge as an asset can facilitate bottom-up problem solving and the meaningful engagement of communities that have historically been marginalised from these forms of innovation.
• The experiences show organisation around symptom surveillance, testing, contact tracing, and risk mapping, linking people to support and proposing feasible, less harmful ways of organising risk settings or implementing lockdowns. Community volunteers have: produced and distributed personal protective equipment (PPE) and other health technologies; self-organised medical, care, and counselling support; and organised food and other essentials for those in need, in ways that address psychosocial challenges and cultural and religious beliefs and that overcome stigma and social isolation. The initiatives have: linked small-scale farmers to household deliveries for food security; provided food through communal gardens, kitchens, and "people's" restaurants; and supported access to emergency lodging, benefit schemes, and safe water.
• Many experiences build on histories, ideologies, structures, organisation, and relationships that began long before the pandemic, enabling a relatively rapid response to new challenges posed by COVID-19 and with an intention to sustain relevant innovations after the pandemic.
• They reach to socio-economically disadvantaged groups within communities, focusing on the assets and energy they can bring to collective processes. This is the case especially where organising processes are participatory and democratic, strengthening collective organisation, investing in capacities and leadership, and making links with more powerful groups to address local priorities and negotiate delivery on state obligations.
• They build new relationships between communities and producers and between communities and health workers, and they feature solidarity-building interactions with international agencies and diaspora communities. The relationships that are forged show the value of productive capacities - economic and system interactions that were previously ignored. While some are a response to imposed measures insensitive to community realities, in others, the state, especially at local level, has provided enabling conditions and resources and is responsive to local initiative, especially where state capacities are decentralised or autonomous. In responding to deprivation or deficit, there is a caution not to take over state duties, nor to be dominated by the state, and an observation from service workers that community organisation and advocacy is what makes the state move.
• A key theme is that a compassionate society enhances public health. While not without challenges and reversals, the experiences are solution-focused and seek to negotiate and lever the resources and relationships people expect from the state.

In conclusion, the case studies carry a consistent message: The response to COVID-19 "does not need to generate fear and coercion. It can be inclusive, creative, equitable and participatory....[C]o-production and co-determination with affected communities are not an optional 'add-on' to COVID-19 responses. They are fundamental to a successful response."