‘We are subjects, not objects in health’: Communities taking action on COVID-19
Loewenson R; Colvin C; Rome N; Nolan E; Coelho V; Szabzon F; Das S; Aich U; Tiwari P; Khanna R; Gansane Z; Traoré Y; Yao S; Coulibaly S; Asibu W; Chaikosa S, TARSC, 2020

This document co-ordinated by TARSC in EQUINET and in the Shaping health consortium, and with input from co-authors from nine countries provides evidence of practical and affirmative options of people-centred, participatory forms of community organizing and engagement in diverse areas of prevention, care and wider social protection in responding to COVID-19. The 42 case studies from different regions intend to inspire, inform and support.

The case studies are unique, diverse and rooted in widely different contexts and histories. In all, the people involved are subjects, full of life, with rights, ideas and rich experience. They report the creative development and use of social media platforms for action 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 ICT that supports problem solving and expression of marginalized voices. Simple tools, norms and standards, and open data facilitate creative community engagement. The experiences show organization around symptom surveillance, testing, contact tracing and risk mapping, linking people to support and proposing feasible, less harmful ways of organizing risk settings or implementing lockdowns. Community volunteers have produced and distributed PPE and other health technologies; have self-organized medical, care and counselling support; and have organized 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. They demonstrate that a compassionate society enhances public health. While not without challenges and reversals, they are solution-focused and use their actions to negotiate and lever the resources and relationships that they expect from the state. Many build on histories, ideologies, structures, organization 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, especially where organizing processes were participatory and democratic, strengthening collective organization, 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 solidarity interactions with international agencies and diaspora communities. The relationships built 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, provided enabling conditions and resources and was responsive to local initiative, especially where state capacities were decentralized or autonomous. In responding to deprivation or deficit, there was a caution not to take over state duties, nor to be dominated by the state, and an observation from service workers that community organization and advocacy is what makes the state move.

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 authors hope that the case studies inspire the proactive efforts of other organizations and communities. They also carry a consistent message: The response to COVID does not need to generate fear and coercion. It can be inclusive, creative, equitable and participatory. 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.

Evaluating efforts that build social power and participation in health systems: Introduction to the briefs
TARSC;Shaping health

These four briefs (separately shown on this site) provide information on evaluation of social participation and power in health to support capacity and practice. They are intended primarily for those working directly with social participation and power in health systems, but also for managers, funders and others who engage with them. They intend to inform thinking and approaches and provide links to deeper resources and do not intend to prescribe or be a ’how to’ toolkit. The four briefs address:
BRIEF 1: The concepts and approaches applied in ‘monitoring and evaluation processes.
BRIEF 2: Approaches to assessing change in social participation and power in health
BRIEF 3: The methods used for participatory evaluation
BRIEF 4: Engaging funders and formal systems on evaluations of social power in health

Health from whose lens? Shaping health participatory satellite session , Global Symposium for Health Systems Research (HSR2018), Liverpool, UK
Training and Research Support with Centre; Escuela de Salud Publica Chile; Centre for health and development Murska Sobota; Municipality of Quito; PIH Health; Athens City County Health Dept; EquiAct,; University of Aberdeen; RWJF, 2018

This document presents a summary of the discussions at the Shaping Health Consortium satellite session at the 2018 Global Symposium on Health Systems Research in Liverpool UK. It briefly captures the ideas exchanged, and images of the session as a reminder (better than words) of the energy and connections in the room! It presents 

  1. An introduction to the session, and key concepts involved in our Shaping health work on social power in health
  2. Two groups, introducing on country case studies with discussions on issues raised from the case studies and participant experiences on grounding health action and services in community systems: Grounding social power in health in local economies – Slovenia and Ecuador and Building and bridging synergies between formal state mechanisms and informal community processes- Chile
  3. A plenary review and discussion of key themes emerging and feedback from findings from Shaping health work
  4. A fishbowl discussion on adapting approaches and learning across settings and countries, and sharing learning to encourage local practice, with discussant inputs from Athens County Ohio and PHI Health US on their experience, from Robert Wood Johnson Foundation on experience as a funder of global exchanges and from participants.
  5. A final summary of follow up points, resources and links
BRIEF 1: How do we understand the concepts of ‘monitoring and evaluation’
Loewenson, M Mastoya, F Obando, P Frenz, C Mbwili Muleya, Shaping Health, 2018

In Shaping health we focused on forms of social participation in health where communities co-decide the actions and services that affect their health and wellbeing. Such processes seek to enhance peoples’ collective power and to challenge power relations that lead to social injustice and inequities in health. How do we understand what works in such processes and what learning we can share? How we evaluate efforts that build social power and participation for improved health and health systems is the subject of the four briefs in this series from Shaping health. In this first brief we outline concepts and terms commonly used in discussions on monitoring and evaluation. We indicate what motivates– and discourages - us in evaluating social participation and power in health, and observe how evaluation processes can themselves affect social power. The brief introduces the basic concepts and terms used in evaluation. It has introduced the different types of evaluation carried out at different stages of processes, and the different forms of evaluation. It outlines the incentives and disincentives for implementing evaluation on social participation and power in health. Evaluations on social power in health are themselves affected by the power relations that affect health equity, and thus advocate for participatory, realist and appreciative forms of evaluation that integrate the lived experience and knowledge of those affected and contribute to their social capacities, voice, confidence and power to produce change.

BRIEF 2: Approaches to assessing change in social participation and power in health
Loewenson R, Mastoya M, Obando F;Frenz P; TARSC Shaping health, 2018

In this brief we discuss options for framing and measuring social participation and power in ways that acknowledge this subjective, relational and complex nature of social change processes and of health systems. The brief outlines the challenges in and some options for defining and setting indicators of social participation and power, used in evaluations of interventions. While evaluations often search for quantitative evidence and such data can be used in evaluations of outputs and outcomes on social power, the brief highlights a range of qualitative forms of evidence to obtain a deeper understanding of processes, relationships, outcomes and factors relating to participation and power, in accessible ways for community engagement. The brief points to questions and measures for assessing the processes, practices, capacities, relationships and power relations involved in strengthening social participation and power in health.

BRIEF 3: Methods used for participatory evaluation
Loewenson R, Mastoya M, Obando F, Frenz P; TARSC Shaping health; 2018

In this brief, the third of four, we outline, with links for further information, the methods that can be used in different stages of participatory evaluation of social participation and power in health. This brief outlines the methods and tools used in formative, process and summative / outcome stages of evaluation of social participation and power in health. The brief gives most attention to methods that enable participatory evaluation, that collect evidence in ways that may be more accessible for community engagement and that may be part of an ongoing strategic planning, management, review that is itself sustained and participatory.

BRIEF 4: Engaging funders and formal systems on evaluations of social power in health
Loewenson R; Mastoya M; Beznec P; Frenz P; Mbwili Mueya C; Obando F; TARSC Shaping health, 2018

In Briefs 1 and 2 we described how a theory of change connects evaluation processes to the thinking behind, design, planning and implementation of programmes, as a means for review and learning. Equally, for funders and communities engaging on evaluation, building this mutual appreciation of the different concerns, assets and experience that each brings cannot only be applied at a late stage, in summative evaluations. A more engaged collaboration and dialogue between funders, implementers, the community and those directly involved in programmes calls for all to be involved and in dialogue across the entire process, from planning to evaluating. This brief discusses issues and tensions in and approaches for doing this, for negotiating diverse interests in evaluations; building shared frameworks and managing different expectations of the evidence from evaluations. Addressing the diverse and sometimes divergent expectations of those engaged in some way on evaluating social participation and power in health is, however, not an issue that can be met by tools alone. Community processes and the actions of those seeking to build social participation and power are in essence about identity, values, rights and politics. At its heart discussions on evaluation are about whose story about the situation, initiatives and changes is being told, what and whose learning and capability are being built and shared.

Building social power and participation in local health systems: Learning from practice
Loewenson R with Beznec P; Coelho V; D’Ambruoso L; Dorras J; Dudding R; Frenz P; Gerrity P; Howe D; Ivie V; Matheson D; Mbwili-Muleya C; Mohanty R; Ndetei D; Obando F; Simpson S; Tanzman B; Wagner B, Zapelli R , Shaping health programme, TARSC, 2017

In 2016/17 the Shaping health project explored how local health systems in different countries have built social power and participation in health, and the challenges they face. This paper synthesises the experiences and learning across the work in the project to address four questions:  Why build social power and participation in health?  How is social participation in health organised, with what tools and resources?  What insights and principles can we share on enabling social participation and power? and Does social participation make a difference?

 

Construyendo poder y participación social en los sistemas locales de salud: Aprendiendo de la práctica
Loewenson R, Mbwili-Muleya C, D’Ambruoso L, Simpson S, Frenz P, Mohanty R, Howe D, Dorras J, Obando F, Ndetei D, Beznec P, Zappelli R, Matheson D, Coelho V, Dudding R, Gerrity P, Ivie V, Tanzman B, Wagner B, TARSC, 2017

La participación social en la salud se refiere al poder y al compromiso individual y colectivo de la gente con las condiciones, decisiones y acciones que afectan su salud y los servicios de la salud. En 2016/2017, el proyecto Shaping health exploró cómo los sistemas locales de la salud de distintos países han construido el poder y la participación social en la salud, así como los retos que éstos enfrentan. Este artículo sintetiza las experiencias y el aprendizaje obtenido durante el trabajo para abordar cuatro preguntas: 1.¿Por qué es necesario construir poder y participación en la salud? 2. Cómo se organiza la participación social en la salud, con qué herramientas y con qué recursos? 3. ¿Qué ideas y principios se pueden compartir sobre las formas para hacer posible la participación y el poder social? 4. ¿Hace alguna diferencia la participación social?

Experiences of social power and participation in local health systems-Volume 2: Key features of the deep scan case studies
Loewenson R, Coelho VS, Calandrini A, Waisbich LT, Frenz P, Alfaro T, Mazzei M, Sgombich X, Ndetei DM, Musyimi CW, Musau AM, Matoke LK, Mutiso VN, Matheson D, Matheson K, . D’Ambruoso L, Abbott P, Douglas F, McPherson E, Okpo E, Beznec P, et al, 2017

The Shaping health project in 2016-17 has explored and shared experiences of building social power and participation in health. We have focused on people living and interacting in particular geographical locations or with common or shared interests and their interaction with local-level health systems, to promote population health. This document compiles in one volume a summary of key features of six deep scan case studies on social participation and power in local health systems in Brazil, Chile, Kenya, New Zealand, Scotland and Slovenia. It draws on the full case study reports, referenced and separately presented.