29 Jan 2021

For many in south London and beyond, the Covid-19 pandemic is having drastic direct and indirect effects. Amidst high levels of infection and illness, poverty and distress, NHS and social care staff are often working under heavy pressure. Many service users and carers, key workers and volunteers are also putting in huge efforts to try to make sure that basic needs are met and provide mutual support. Others are seeking to tighten workplace and community safety and prevent further harm to the worst-affected, sometimes working alongside and at other times challenging those in powerful positions.

Lessons learned from responding to an earlier epidemic 

In the 1980s and ‘90s, some of us were involved in responding to an earlier global epidemic, of HIV/AIDS. This too harmed many locally, nationally and internationally. Yet the impact would have been still worse if patients and communities had not organised alongside supportive professionals to strengthen prevention and care. This included sharing health information, pushing for better treatment, volunteering to support the sick and tackling injustice and prejudice, which left some people even more vulnerable.

The concept of syndemics and its relevance today

At that time, a new concept was coined by a medical anthropologist working for the Hispanic Health Council in Connecticut, USA. This brought together health researchers, healthcare providers and community activists to improve health and access to care for a minority ethnic community facing widespread disadvantage and discrimination. Drawing on knowledge emerging from working together, Merrill Singer came up with the concept of syndemics. This offers a framework to explore how people in some sections of the population frequently face two or more connected health problems made worse by social, economic, environmental and political conditions.

This remains highly relevant today, especially in the midst of a coronavirus pandemic which has highlighted the depth of health inequalities arising from differences in wealth, status and control. So does some of the other learning from that epidemic, though in those days before wide access to the worldwide web, it was far harder to collect and share information and views.

The breakthroughs in knowledge which might arise could be highly important now and in the future.

Savi Hensman

Savi Hensman, the ARC’s patient and public involvement coordinator

Enriching research and creating new knowledge through involvement 

Today, in the ARC and beyond, basic involvement of diverse service users, carers and communities can enrich research projects. Yet working together at a deeper level might enable teams to go further in identifying, and helping to address, key questions for those most deeply affected or on the frontline of responding to the immediate crisis and ongoing threats to wellbeing. This may include co-production.

Truly equal partnership which recognises the many facets of the pandemic, and multiple ways in which people and groups have worked to support and protect themselves and their neighbours, might not be easy to achieve. Yet the breakthroughs in knowledge which might arise could be highly important now and in the future.