Introduction

There has been a growing momentum concerning patient and public involvement (PPI) in research over the last decade in the UK, with the concomitant establishment of appropriate infrastructure, in particular, the development of INVOLVE (Hanley et al, 2004), which is supported by the Department of Health (DH) expressly to promote PPI in research. In 2005, the DH explicitly stated that members of the public, including service users (patients) and carers, should be actively involved in ‘design, conduct, analysis and reporting of research’ (DH, 2005), while the National Institute for Health Research (NIHR) increasingly requires evidence of active public involvement when commissioning health care research (NIHR, 2012). The NIHR is one of two main public bodies (the other being the Medical Research Council) through which health care research is funded in the UK, and is therefore hugely influential in this area. Principles for good practice when involving service users in research have also been published in different areas of health care, in particular mental health (UK Mental Health Research Network, 2011).

Over a similar period, theorists and other academics have started to develop and codify knowledge concerning issues arising from PPI in research. These have included the definition of different models of participation and a discussion of different conceptions of knowledge itself (Nolan et al, 2007; Oliver et al, 2008; Morrow et al, 2010). In this chapter, we intend to discuss some of these issues in relation to our real-world experience of leading and working on academic-funded projects in which service users have played active roles to varying extents.

At the University of the West of England (UWE), over the last five years, we have had a particular focus on working with service users across a range of activities within the institution, including research. We have assigned the term ‘service user research partner’ to those individuals, neither academics nor health or social care practitioners, who have been active within research projects. In 2010, we produced a guide for good practice for involving service users in research, developed jointly by services users, carers, academics, practitioners and members of the public (UWE, 2010).