Abstract
BackgroundPatient and public involvement (PPI) in research has increased steadily over the last two decades and is now both expected and appropriately resourced by many funding bodies, including the National Institute for Health Research (NIHR). However, PPI in research occurs in many different capacities and numerous frameworks exist for reporting or appraising patient involvement activities. The aim of this article is to describe processes involving PPI contributions to an NIHR-funded mixed-methods feasibility study (MoTaStim-Foot). Details of PPI advisors’ input, from initial identification and prioritisation of research ideas, to research delivery and dissemination, are discussed.MethodsExtensive PPI for MoTaStim-Foot is reported, with consideration of Research Design Service (RDS) advice for PPI for research, involving identifying and prioritising: design; grant proposal development; undertaking/managing research; analysing and interpreting; dissemination; implementation; monitoring and evaluation. Two PPI workshops were undertaken; success in meeting UK standards for public involvement was audited against specific success criteria by two researchers, with discussion and consideration regarding how well our PPI achieved inclusive opportunities, working together, support and learning, governance, communications and impact. How PPI can be improved for future trials was also considered. Although the advantages of PPI for researchers were considered, the benefits for PPI advisors were also analysed.ResultsUK standards for public involvement were achieved, along with seven relevant research processes suggested by the RDS. PPI advisor contributions: informed study design; contributed to successful funding; enhanced trial delivery by informing participant information sheets and daily diaries; added value through undertaking note-taker roles in focus groups and helping to analyse focus group transcripts; and assisted in dissemination. However, benefits were mutual with PPI advisors reporting feeling valued and respected, a sense of pride with renewed confidence and purpose in life.ConclusionsImportance and value of PPI, to researchers and patient advisors, have been highlighted, reinforcing the benefits of working in partnership with PPI advisors.Trial registration ISRCTN 13676183; Central Portfolio Management System ID 30449. Registered 02/01/2015, https://www.isrctn.com/ISRCTN13676183.
Highlights
Patient and public involvement (PPI) in research has increased steadily over the last two decades and is both expected and appropriately resourced by many funding bodies, including the National Institute for Health Research (NIHR)
Definitions for patient and public involvement (PPI), as it is more commonly known, have been suggested, with Rise et al [3] highlighting the importance of mutual respect and discussions to reach collective decision making
Various ideas exist for public involvement activities, and activities are often poorly defined in the literature [11]; evaluating the impact of PPI for research is challenging [12], some useful models have been suggested [13]
Summary
Patient and public involvement (PPI) in research has increased steadily over the last two decades and is both expected and appropriately resourced by many funding bodies, including the National Institute for Health Research (NIHR). PPI in research occurs in many different capacities and numerous frameworks exist for reporting or appraising patient involvement activities. Various ideas exist for public involvement activities, and activities are often poorly defined in the literature [11]; evaluating the impact of PPI for research is challenging [12], some useful models have been suggested [13]. A recent systematic review found 65 published frameworks to appraise or report PPI within medical research and the authors proposed that a locally developed bespoke frame-working process for PPI should be co-designed to address this gap [14]. The value of such collaborative workshops with PPI advisors has already been demonstrated at Keele University when developing a training programme with our PPI advisors [15]
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