Exploring the value of service user involvement in data analysis: ‘Our interpretation is about what lies below the surface’

Abstract

In this article the process and outcomes of service user involvement in the analysis of data are discussed. The analysis formed part of a doctoral participatory research project, which involved researcher and service users working together. The focus of the research was on the experience and needs of service users with life limiting conditions including any influence on the experience produced by social factors. Service users with a range of life limiting conditions took part in the research. A separate group of service users affected by life limiting conditions formed the Service User Research Advisory Group (SURAG) that met 32 times over three years and was an integral part of the research. A novel and workable collaborative analysis approach is described along with the identification of similarities and differences between researcher and service user interpretations of data.

Public involvement at the design stage of primary health research: A narrative review of case examples

“…clinical trials [21]); and different stages of the research process (e.g. prioritisation [22], interpretation [23]). …”

Hearing the voices of service user researchers in collaborative qualitative data analysis: the case for multiple coding

“…First, Cotterell, a palliative care nurse researcher, worked with a group of service users with life-limiting conditions to understand more about the experiences and palliative care needs of others with life-limiting conditions. 22 Cotterell found that his analysis produced different results to that of the service user group, with Cotterell focussing on the professional and service users focussing on the emotional and the critical. To Cotterell, this demonstrated that service users are '"agents of knowledge" and, despite substantial difficulties, can also be willing and able to contribute to new knowledge production'.…”

A scoping review: The utility of participatory research approaches in psychology

“…Cotterell () describes a robust process of collaborative and iterative analysis including a “series of 10 analysis sessions in which all transcripts were analyzed in turn, four theme generation sessions, one session to expand or collapse the analysis into final themes, and, lastly, a session to integrate phase one and two themes where possible” (p. 667). Hutnik, Smith and Koch () describe an interesting process of iterative story creation, and Castleden, Garvin, and Huu‐ay‐aht () as well as Jacklin and Kinoshameg () describe training community members to work as data analysts.…”

“…Finally, our review highlights that while research "participants" in PR projects share the characteristic of being based in places other than postsecondary institutions, their characteristics are otherwise highly variable. For example, participants can be community organizations that provide services (e.g., Bowden et al, 2006;Checkoway & Richards-Schuster, 2003), or service users themselves (e.g., Cotterell, 2008;Taggart et al, 2013). In research focused on youth/adolescent development, "participants" were sometimes youth (e.g., Levac, 2013), but commonly parents, teachers, or youth-serving organizations.…”

“…Approaches included: Discussions among team members (e.g.,Mill, 2001;Mill et al, 2010;Wainberg et al, 2007), joint coding (e.g.,Andrasik et al, 2012;Burkhalter et al, 2013;Lorion, 2004;Maher et al, 2007;Matebeni, Reddy, Sandfort, & Southey-Swartz, 2013;Mohatt et al, 2004), "talking circles"(Schinke et al, 2010), and interpreting maps(Amsden & VanWynsberghe, 2005) and images(Foster-Fishman et al, 2005;Jacobs & Harley, 2008). As well, the participatory nature of the arts-based photovoice method includes participantled analysis of the meaning of their photos (e.g.,Aldridge, 2007;Garner & Faucher, 2014;Taggart et al, 2013;Vaughan, 2014) Cotterell (2008). describes a robust process of collaborative and iterative analysis including a "series of 10 analysis sessions in which all transcripts were analyzed in turn, four theme generation sessions, one session to expand or collapse the analysis into final themes, and, lastly, a session to integrate phase one and two themes where possible" (p. 667) Hutnik, Smith and Koch (2012).…”