Evaluating the impact of patient and public involvement on cancer research outcomes: A UK mixed methods study

Interest in patient and public involvement (PPI) in healthcare research has been growing. In the UK and internationally there is increasing demand for researchers to demonstrate the value of PPI both in their work and to funding bodies. Existing evidence demonstrates that reporting of PPI has been limited and inconsistent. In particular, whilst there is growing evidence about the use and efficacy of PPI in research processes, little is known about how to evaluate the impact of PPI on research outcomes. The aim of this research was therefore to evaluate the impact of PPI on cancer research outcomes. An interpretivist and pragmatist methodology was adopted to explore how the impact of PPI on cancer research outcomes can be evaluated, using a mixed methods sequential design. In phase one, 23 in-depth interviews were conducted with patients, researchers and stakeholders from the East Midlands region to explore perceptions of the impact of PPI on research outcomes and their experiences of involving patients and the public in research outcomes. In phase two, a modified Delphi study was conducted with 35 experts across England in order to refine and enhance knowledge about the impact of PPI on research outcomes. Data were analysed using Braun and Clarke (2006). End user involvement was embedded in the study at key stages and evaluated using the GRIPP 2 checklist (Staniszewska 2017). Limitations to this research study included the paucity of black and minority ethnic participants and being only East Midlands focused in phase 1. Findings from the interviews and the Delphi study demonstrated that there are several factors which shape the impact of PPI on research outcomes. These are: PPI in commissioning; PPI in research processes; PPI in dissemination; PPI in implementation; information and communication technology; power and leadership; resources and the political context; networks; and wanting to make a difference. Data show that the evaluation of the impact of PPI on research outcomes was achievable at four stages: pre-implementation, partial-implementation, during-implementation and post-implementation. Reflexive analysis of the use of end user involvement within the study included a consideration of the challenges of involvement for PhD researchers. Drawing on theoretical insights about PPI in research and work from the field of implementation science, this thesis makes an original contribution by arguing three main points. First, that PPI can be considered as a complex intervention (Craig et al. 2008). Second, that as a complex intervention, the impact of PPI on research outcomes can therefore be evaluated using the Consolidated Framework for Implementation Research (CFIR) (Damschroder et al. 2009). Third, using the CFIR, particularly the domain of ‘process of implementation’, enhances understanding about the success or failure of the implementation of PPI in practice. The data highlight particular attention should be given to the time and resource implications required to conduct effective evaluation of the impact of PPI on research outcomes