Keeping it personal: Retaining the voice of personal experience in the analysis of large, complex sets of data

2008 Conference

Methods for involving patients and the public in research are well established, including roles on steering groups, in study design and data collection. But what happens to the voice of personal experience when large, complex sets of data are analysed?

In a national study exploring how ‘self-care’ policy is implemented in mental health Trusts, people with a broad range of personal experiences of mental health issues were integral members of a large research team. The team also incorporated psychologist, nursing, psychiatry, social work and organisational researchers. Three different self-care projects were included in the study which sought the perspectives of people who attended these projects, their carers and project staff.

An interactive approach to analysis was used with the aim of engaging the whole team in the process, including:

• Audio-recording of team discussions of interview data
• Production of a large visual analysis ‘matrix’
• Individual team members’ written reflections

This created a new ‘layer’ of data that captured the interpretations of different team members. In this presentation we discuss the interactive process and reflect on its success. How inclusive was the process? How did we manage the additional complexity? Did the analysis that emerged successfully retain the voice of personal experience?