What is it about?

We examine how young people with sickle cell disease try to use their patient expertise during emergency hospital admissions. They face barriers to care in non-specialist wards, particularly when they are alone. Although healthcare services encourage young people to act as patient experts, in practice this expertise is often ignored. To improve health service quality and meet the needs of young people, their own expertise must be better supported by healthcare providers.

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Why is it important?

Involving young people in their own healthcare is a global priority, yet we know little about how this might work in practice. This paper is one answer to that. We show that even though healthcare services encourage young people to take control of their own health, in practice this expertise is routinely ignored. Young people's expertise needs to be better supported by non-specialist providers.


The experience of co-authorship with sickle cell patient experts and a carer for a young person with sickle cell was a valuable experience. The publication is an excellent result of the co-produced nature of this project and of our collaborative relationship with them.

Sam Miles
London School of Hygiene & Tropical Medicine

Read the Original

This page is a summary of: Obstacles to use of patient expertise to improve care: a co-produced longitudinal study of the experiences of young people with sickle cell disease in non-specialist hospital settings, Critical Public Health, September 2019, Taylor & Francis,
DOI: 10.1080/09581596.2019.1650893.
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