Involving service users in qualitative analysis: approaches and assessment

The idea that service users should be involved in all stages of health services research continues to prevail among policy makers, and insights into the impacts of involvement are accumulating. The question of how service user involvement can affect the quality of knowledge generated by research seems particularly important. For qualitative research, the use of service users as interviewers has been found to have both positive and negative implications for the quality of data collected, perhaps depending on contingent circumstances. The implications of service user involvement in data analysis have been less well explored, although in some cases it has clearly helped avoid or correct misinterpretations of data. Two papers in this issue of Health Expectations report experiences of service user involvement in qualitative data analysis. They could usefully inform the development of involvement strategies and of methods for assessing the impact of service user involvement. The first paper illustrates how people with (some forms of) learning disability can, with appropriate support, engage in and contribute significantly to the analysis of qualitative data. Irene Tuffrey-Wijne and Gary Butler discuss their experiences of working together, as someone without and someone with learning disabilities, on the analysis of data from an ethnographic study of people with learning disabilities who had cancer. Irene and another colleague had conducted a preliminary analysis. To enable other members of the research team to help refine and validate this, Irene prepared extensive vignettes relating to each of the people with learning disabilities and cancer who had participated in the study. Gary and two other members of the research team read and identified key themes from these vignettes. Irene worked with Gary to record and explore his responses to the vignettes as he read them. Irene reflected that Gary had unique insight (among the research team members) into experiences such as the dependence of people with learning disabilities on social care staff. She thought his analytic contributions confirmed the themes already identified by the rest of the research team, bringing some of them into sharper focus , and helped validate the data analysis . Irene and Gary s paper includes a description of the way that Gary interpreted one participant s case more positively than other team members had. This prompted a discussion of the significance Gary attached to the genuine care shown by a care home manager. A comparison of the lists of themes identified by Irene and by Gary with the list of themes that the whole team agreed shows that Gary s notion of genuine care was reflected in the final analysis. The second paper, by Steven Gillard et al., reports on a preliminary attempt to conduct a more formal and quantitative comparison of the contributions that traditional university researchers and service user researchers make to both data collection and analysis. I focus here on the work on analysis. Steven and his colleagues had used semi-structured interviews to explore people s experiences of being compulsorily detained under English mental health legislation. Their team included three mental health service user researchers and three conventional university researchers . All six contributed to the analysis. To start, they each read the same set of extended extracts from interview transcripts and marked and attached short labels to passages they thought were interesting or important. They discussed their various labels and used them to develop a list of 13 broad theme codes that were then applied to the whole data set. The team subsequently exploited the opportunity their initial coding exercise provided to compare the types of issue highlighted by the doi: 10.1111/j.1369-7625.2010. 00611.x