Experiencing life: looking at ‘lived experience’

As part of its commitment to navigate a new course of integration and partnership, NHS England’s recent paper outlining a local-led approach to healthcare recommends “co-production with people with lived experience”. However, individual subjectivity is a complex area and without careful consideration its value can be undermined.

Phenomenology (or the study of experience) can go some way to helping us understand another person’s perspective and to incorporate this into service design and delivery. Researchers and other professionals seeking to access someone else’s viewpoint face the intimidating obstacle of not letting their own preconceptions colour their findings; this is what phenomenology seeks to tackle. 

Two main approaches exist in this school of thought. On the one hand, a transcendental approach to phenomenology expects researchers to “bracket off” their previous knowledge and assumptions (in theory to the extreme of setting aside the world and the entirety of its content), while on the other, a hermeneutic approach accepts that individuals have an understanding of their “lifeworld” which is inescapable and must instead be understood through the layers of their social, cultural and political contexts.

Many charities have incredible networks from which to draw insights about people’s experiences of services, and through this they can improve their own and lobby more effectively on behalf of their beneficiaries. Some even go further and are entirely led by people with direct personal experience of the health or social issue the charity was established to campaign on. This is particularly important in organisations which aim to help people who have had previous negative experiences of statutory services and would benefit from a relationship with a professional based outside of the public sector who has been through similar life events to themselves. The Hepatitis C Trust, which is the largest patient-led organisation for hepatitis C in Europe, has demonstrated significant increases in engagement with healthcare services when patients are supported by peers to access treatment.

A welcome shift has been seen in health policy in recent years towards recognising these merits. Yet when utilising expertise gained through experience via surveys and interviews, research teams must be wary of pre-empting the conclusions of such conversations to align with already planned or current campaigns. Difficult though it may be, phenomenology teaches us to set aside our hypotheses, preconceptions and inclinations to equate an individual’s experience to that of an entire group; instead, a more critical examination of how we understand lived experience may offer a richer picture, forcing us to really listen and respond to people rather than using their words to justify decisions and policies already fully formed.