Back to basics – understanding lived experience and intersectionality in health and care

There is a well-established case for involving communities and people with lived experience in health and care policy, service design and delivery. NHS England guidance on working in partnership with communities highlights the financial benefits and improvements to quality and health outcomes that working with local communities brings.

At The King’s Fund, we have publications and blogs reinforcing this message and challenging systems to think differently about working with local communities and people with lived experience of services when designing and delivering care. But could this involvement go further? There are people who argue for the use of intersectional approaches in understanding people’s lived experience of care in tackling ethnic health inequalities. These intersectional approaches help health and care providers shift their focus from people’s behaviours to also identifying and addressing ways of working that create and reinforce inequalities and poor experiences of care.

At this year’s GSK IMPACT Awards I met a manager from a voluntary and community sector organisation, and this blog is based around our discussion on lived experience and intersectionality. I introduced myself to him and shared my interest in how health and care providers work with ethnic minorities with lived experience of care services to tackle inequalities in access, care and outcomes, with a specific focus on gender and use of intersectional perspectives – I do admit that it was a mouthful. The manager laughed and said, ‘I am so sick of hearing about lived experience and intersectionality from people in health – what does that even mean?’ I laughed too, as it was not the first time I had heard such a response. Often, as professionals we use concepts in ways that people outside our immediate organisation or sector may find confusing.

'People from different cultural, national and other backgrounds may not have expertise or professional knowledge about how systems work, but their experiential knowledge is invaluable to policy and service design that meets people’s needs and tackles ethnic health inequalities.'

So, what is lived experience? The notion of lived experience is not new. Lived experience as a concept is about understanding people’s interactions with services from their perspective and the meanings they derive from those experiences and interactions. People with lived experience bring a different perspective to health and care policy, service design and delivery. Discussions on working with people with lived experience must also be framed within a health and care context that sometimes is seen as privileging professional expertise and quantifiable data. This becomes even more important for ethnic minorities, whose contribution to policy and care design is often marginal – contributing to poor care and health outcomes. People from different cultural, national and other backgrounds may not have expertise or professional knowledge about how systems work, but their experiential knowledge is invaluable to policy and service design that meets people’s needs and tackles ethnic health inequalities.

Health and care professionals recognise that people’s experiences of care differ based on multiple intersecting factors. So, intersectionality provides a framework through which service providers can better understand how the different factors – including race/ ethnicity, age, socio-economic factors, gender, culture, religion, immigration status and class – work together in disadvantaging population groups and creating inequalities. For example, a recent report on maternal care shows that women from Black and Asian backgrounds are more likely to die in childbirth and receive poor care than other ethnicities. The report shows these disparities are a result of multiple socio-economic and structural factors that interlink and increase mortality rates. An intersectional approach, therefore, helps care providers to understand the multiple factors that contribute to disparities in maternal care and to develop appropriate care approaches.

'Shifting the focus from people’s behaviours to systems processes and practices enable services to challenge models of care that view people from ethnic minority background as victims with no agency.'

More importantly, intersectionality provides opportunities for health and care providers to identify and address institutional structures and practices that create barriers to meaningful engagement with people with lived experience from marginalised groups and delivering services that meet their needs. When tackling ethnic health inequalities, services often place emphasis on how people’s behaviours and backgrounds shape their experiences and access to health and care. Shifting the focus from people’s behaviours to systems processes and practices enable services to challenge models of care that view people from ethnic minority background as victims with no agency. Instead, people from ethnic minority backgrounds are active participants in their interaction with services, have a choice in their health care and draw on available socio-cultural resources to navigate the health and care system.

After much discussion the manager and I agreed that although concepts and language may change over time, the principles of engaging with people with lived experience on the margins of society will always be a priority. Organisations need to think about what it means to use an intersectional lens and create an inclusive environment where services engage with marginalised groups whose voices are seldom heard in a meaningful way.