The social life of infectious diseases

Health promotion, by CDC Global (published on Flickr under a Creative Commons attribution 2.0 licence)

This story looks at how the ESRC STEPS Centre’s research on epidemics fed into responses to the Ebola outbreak in 2014, and the need for long-term work across disciplines to respond to infectious diseases. It is the first in a set of impact stories looking back at STEPS work over the past decade.

The Ebola epidemic that broke out in 2014 was the first to hit West Africa, and the worst ever recorded. Most of the cases were in Guinea, Liberia and Sierra Leone. By October the disease had killed nearly 5,000 people.

As the outbreak grew, more and more agencies in the region and beyond joined the fight against it. Attention also turned to the dynamics of the outbreak, how best to prevent its spread, and how to treat people safely and effectively in urgent and sometimes chaotic conditions. As well as fighting the disease on the ground, it was important to understand the reasons behind its spread, and the social and cultural responses to it.

What went wrong with Ebola?

Why did the Ebola outbreak get as bad as it did, and what can we learn from the response? The scale and speed of the outbreak was put down to weak health systems, a lack of resources, and fear. But there were other factors too. It became clear that violence in the region had left a deep legacy of mistrust in the population, leading to rumours and suspicion of health workers. Changing patterns of migration may also have led people to be more at risk.

Beyond this, there lay a deeper and less obvious history — largely ignored in the urgency of the response. This was the reality of structural violence — long term exclusions and injustices affecting the countries and communities involved. It isn’t just that these countries (among the poorest in the world) were more vulnerable because of poverty and a lack of development: it could be said that the histories of inequality actually shaped the rhetoric, institutions and governance at international level that should have moved quickly to help.

Structural violence also influenced how much attention was given to different voices and perspectives in responding to the disease — something that turned out to be highly important for Ebola.

Understanding epidemics

The STEPS Centre’s research on epidemics goes back to 2006, with research on avian influenza (H5N1). Like Ebola, avian flu is a zoonotic disease — emerging through contact of humans with animals. This means that responses needed to look not just at caring for human patients, but at the changing ways that birds are kept and farmed, and food is produced. It means that vets, doctors, scientists, farmers, politicians, consumers and international agencies were all involved in different ways.

Avian Influenza Surveillance at Bangkok’s Klongtoey Market, by USAID Asia on Flickr (cc by-nc 2.0)

The STEPS project focused on four countries in South-East Asia: Cambodia, Indonesia, Thailand and Vietnam, working with the UN Food and Agriculture Organisation (FAO) under its Pro-Poor Livestock Policy Initiative.

The aim was to understand the policies and politics around avian flu, the assumptions made and how debates are framed by different people. Who would win and lose from different responses to avian flu, and could these be crafted in a way that could cope with uncertainty and surprise?

The Avian Influenza book from STEPS.

The project culminated in a 2010 book edited by Prof Ian Scoones, which brought together the lessons learned. A further book, on epidemics, looked at the narratives and assumptions around different epidemics (including SARS, obesity and HIV/AIDS), comparing short term responses and long term planning.

Why are pandemics so controversial?

A common thread in the stories of pandemics was that, although there seemed to be a clear case for preparing for them, governments often took much persuasion to come to the planning table. One reason appeared to be that so many aspects of preparing for pandemics were deeply controversial. Access to medicines and intellectual property for vaccines were hotly debated; there were even arguments about what to call swine flu.

In a workshop at the Institute of Development Studies in 2013, STEPS explored what could be learned from these controversies. The event, co-organised with the Centre for Global Health Policy, brought together academics with those working in international agencies related to public health, including the UN Food and Agriculture Organisation (FAO), the International Livestock Research Institute, the World Bank and the World Health Organisation (WHO).

A playlist of video interviews with participants at the STEPS/CGHP workshop in 2013.

It seemed that controversies would always arise around preparing for pandemic flu: which interventions should we put in place to protect public health? What effects would they have for different people? Are rich countries given greater priority than poor ones? What do local people in different parts of the world want, and how does this clash with what scientists or politicians think is important?

Lessons from avian flu

These controversies meant that, beyond medical concerns, there will always be questions of economics, politics and justice involved in responding to disease.

The controversies made good entry points for understanding the politics of pandemic flu. Looking at how they had played out in the past also revealed some important lessons: the need for good evidence, transparency about uncertainty, and including different sources of knowledge in planning.

Dynamic Drivers of Disease

In 2011, the STEPS Centre became a leading partner in another research initiative, the Dynamic Drivers of Disease in Africa Consortium, focusing on four zoonotic diseases (Lassa fever, Henipavirus, Rift Valley fever and trypanosomiasis) in five African countries. As a multidisciplinary project, it included environmental, biological, mathematical, social, political, and animal and human health researchers from 21 partners across three continents.

Participatory mapping in Kenema district, Sierra Leone, by Catherine Grant © Dynamic Drivers of Disease in Africa Consortium, used with permission

The mix of disciplines would help in understanding the complex relationships between disease, ecosystems and poverty — in particular how wider global patterns such as climate and land-use change affect how diseases emerge and spread.

When it concluded, Dynamic Drivers published a set of impact stories showing how its research had helped to inform decision making for the future. These include new, detailed risk maps for Rift Valley fever (PDF), already put to use by the Kenyan government; and the identification of the patches of land (PDF) to which tsetse flies are increasingly being confined in the Zambezi Valley in Zimbabwe. Tsetse are the insect vector of the trypanosomiasis parasite which causes disease in animals and sleeping sickness in people. This evidence will help local governments and agencies to target their responses more effectively to areas at most risk.

How do One Health approaches work in practice?

As with previous STEPS research, the Dynamic Drivers project applied a ‘One Health’ approach. One Health recognises that only by considering animal and environmental health alongside human health can better and more effective poverty and public health interventions emerge. This meant that researchers from different disciplines had to work together and try to integrate their analysis — a challenging task, but one that is increasingly called for in public health research.

The focus on One Health was picked up in a book edited by Kevin Bardosh, one of the researchers on the project. Although One Health was gaining acceptance as a useful framework, there had not been enough attention to how social, political and economic contexts influence efforts to make it happen in practice. The book explored how One Health research and policy had interacted in Kenya, Zambia, Nigeria, Ghana and Sierra Leone.

Learning from anthropology

In 2014, the project had to drop its original plans in Sierra Leone when Ebola broke out. Medical facilities and resources were diverted to deal with treatment and prevention. Researchers involved in the STEPS Centre and their colleagues joined together to apply lessons from their work on epidemics to the current crisis.

One response was to share research on the social, cultural and political aspects of Ebola, in ways that could help to guide medical interventions. With colleagues at other institutions in the UK, USA and Sierra Leone, they set up the Ebola Response Anthropology Platform (ERAP), a website to bring together relevant existing and emerging research. This included briefings about clinical trials and preparedness, how people manage the dead and care for the sick, and why some medical efforts had been hampered by rumours, resistance and even violence.

A screenshot of the Ebola Response Anthropology Platform website.

A related project, part-funded by STEPS, Ebola: lessons for development initiatives, aimed to ask long term and serious questions about how current development models and practices might have contributed to the unfolding crisis — looking beyond the immediate response to the disease.

Cumulatively, the Ebola initiatives influenced and engaged high-level actors including UN Mission for Ebola Emergency Response, Ministry of Defence and Department for International Development (DfID). Melissa Leach, former STEPS director and now director of the Institute of Development Studies, joined the UK Government’s Scientific Advisory Group for Emergencies (SAGE) on Ebola. Mark Walport, the government’s Chief Scientific Adviser, reflected that the case of Ebola highlighted “the central contribution of the social sciences and humanities to informed decision-making” — with implications for scientific advice in other fields. The team won an ESRC prize for outstanding international impact.

Transdisciplinary challenges

Despite these successes, the Dynamic Drivers of Disease in Africa consortium had also highlighted an important challenge: that of combining different research disciplines.

The consortium had faced a difficult and ambitious task — combining researchers from social sciences, veterinary science, public health, mathematics and wildlife departments in 21 institutions. The researchers had to overcome differences in language, what assumptions they made about how things work, what methodologies and data they used and how their data could be combined and interpreted. In a short funding timescale, it was only possible to get part of the way down the road towards the kind of relationships that could be so powerful for addressing complex challenges like Ebola.

Some of these connections have been maintained in new programmes, including the Tanzania-based Livestock, Livelihoods and Health project, and in a project on pig-farming and disease in Myanmar.

Interdisciplinary research may be a hot topic, but there are reasons why researchers find it difficult to get involved — from how the research is valued and evaluated, to the need for younger researchers to specialise early, and the way funding is structured.

The recently-launched £1.5bn Global Challenges Research Fund now calls for ‘challenge-led disciplinary and interdisciplinary research’. The challenges it seeks to address — overlapping strongly with the Sustainable Development Goals — are described by the GCRF as “complex, protracted and multi-faceted”, requiring a holistic, whole-system view.

The STEPS Centre’s experience over the last decade may provide some lessons for the kind of relationships and methods that could meet these goals. It might also show how researchers, practitioners, governments, health workers and citizens could work together to respond to the next big pandemic. By working together across boundaries, they may avoid some of the mistakes of the past.

An ESRC Centre exploring how sustainability relates to politics, development, science & technology. Hosted at IDS + SPRU, Sussex University.

An ESRC Centre exploring how sustainability relates to politics, development, science & technology. Hosted at IDS + SPRU, Sussex University.