Uncovering the voices of the most vulnerable in health systems is important

The President’s Lecture 2021 webinar hosted by RSTMH brought about some thought provoking conversation and presentations from Professor Sally Theobald and her colleagues, Abriti Arjyal, Bachera Aktar and Zeela Zaizay.

The webinar was a great opportunity to share learning on analysing and addressing intersecting inequities in global health across different contexts, projects and health issues. The presentations demonstrated the power and the potential of social science, participatory process and co-production processes for change.

The event highlighted three different projects that focus on three different types of neglected areas. These are neglected countries: particularly fragile and shock prone contexts, neglected communities in urban informal settlements and neglected health issues or conditions like neglected tropical diseases and stigmatising skin conditions.

Metaphors exert a powerful influence on our daily lives and Sally used a very significant one as she launched her speech. We are all in the same storm, but we are not all in the same boat. COVID-19 has demonstrated that we live in an interconnected but unequal world. We are differentially positioned in terms of our vulnerabilities to the pandemic. COVID-19 has been seen as a spotlight that amplifies the existing inequalities; exposing and often exacerbating these inequities.

In the UK, black and minority ethnic groups and people living in cramped conditions have been particularly adversely affected. The pandemic has also impacted and exacerbated how inequalities play out on a global stage.

Engagement with a community health volunteer (CHV) in the photovoice process in Foyah District, Liberia. Photo: REDRESS

Neglected Countries

ReBUILD for resilience research consortium works in partnerships in Sierra Leone, Lebanon, Nepal and Myanmar. They focus on fragility in health systems because 2 billion people around the world live in fragile and conflict affected settings (FCAS). The number of poor people living in FCAS is expected to rise 60% from the current 17% according to projections from the World Bank and other organisations. These settings experience multiple health challenges that emanate from severe resource constrains, multiple shocks and stressors to the health systems like the COVID-19 pandemic, weak and contested institutions, as well as the absence of reliable routine data.

The ReBUILD consortium has a resilience framework which focuses and grounds health systems; and views them as complex adaptive systems with gender, equity and human rights also being central. Sally explained the intricacies of how all this works together to underpin ReBUILD’s work and focus on health systems strengthening and access to better health.

Human resources is a key area of focus and particularly, community health workers (CHWs). CHWs are critical bridges between often neglected marginalised rural communities and health systems. They have proved to be essential, trusted and first-line responders providing health services in settings affected by conflict; often juggling many different programmes. It is the cadre every vertical programme wants to link and work with; resulting in a host of responsibilities. COVID-19 has brought new challenged and layered additional responsibilities for them.

Abriti Arjyal presented findings from the consortium’s study; the gendered experiences of community (CTC) providers in Fragile and Shock Prone Settings: Implications for Policy and Practice during and Post COVID-19. The most vital information she shared is the fact that these cadres play an important role in the COVID-19 response. Their experiences and challenges are shaped by existing gender norms and challenges. Thus, understanding these and incorporating these in design and implementation of community health programmes would not only ensure effective roles of female CHW but also broadly serve to amend existing gender inequities among community providers.

Female Community Health Volunteers (FCHVs) gathered to plan for a community health campaign. Photo: HERD International

Neglected communities

Countries are urbanising fast and in cities one in three people live in urban settlements. Speaking about the ARISE consortium work, Sally mentioned that cities face innumerable challenges. Some of these include housing, food insecurity, water and sanitation, pollution, access to healthcare among others. Most of these are caused by long-standing neglect from states as well as residents’ limited voice and power.

Cities illustrate some of the world’s darkest disparities in income, health and wellbeing. The presentation spelt out the consortium’s vision and how they carry out their work; referencing Bangladesh.

Bachera Aktar, who presented on the Bangladesh ARISE work, indicated that new vulnerabilities and vulnerable groups emerged during the pandemic with anticipated impacts into the post-pandemic era.

COVID-19 has generated new challenges impacting the broader social determinants of health and wellbeing. Bachera summarised the diversity of methods and approaches they have used to support the co-production of research with peer researchers and communities living and working in informal settlements. She highlighted the importance of ongoing community engagement to support translating research into action.

Neglected conditions and diseases

The aim of the REDRESS project is to use a person-centered approach to evaluate existing health system interventions for the management of severe stigmatising skin diseases in Liberia. People centered approaches are at the heart of REDRESS; meaning consciously adopting the perspectives of individuals, families and communities; seeing them as participants as well as beneficiaries and responding to their needs and preferences in humane and holistic ways.

Zeela Zaizay spoke about the community engagement, involvement and participation that they have been using in REDRESS in Liberia. Community engagement in this setting facilitates problem identification, design, planning and implementation of programmes.

He outlined key priority areas in REDRESS including establishing community advisory boards and a Ministry of Health technical advisory board; involving people affected by severe stigmatising skin diseases and other community actors as peer researchers, using participatory methods to elevate and listen to community voices and ongoing sharing of learning.

Lessons learned

The pandemic has indeed illustrated that no one is safe until we are all safe. There is a need to understand disparate voices, perceptions and knowledge hierarchies in making decisions. Combined efforts are called for to promote key issues such as vaccine inequity and reviewing existing structures and systems around key issues like funding and vaccination politics.

Teamwork and partnership are essential for strengthening and supporting health systems that are inclusive, people centred and built on the diverse views, perspectives and experiences illustrated in the presentations.

There is a need for continuous discussions on challenging knowledge hierarchies and applying the use of innovative research methods including social science and participatory knowledge to build partnerships and action and equity.