The development of a scheme of Public & Patient Involvement (PPI) in the Wales Cancer Research Centre (WCRC) and reflections on the process

Abstract

The Wales Cancer Research Centre (WCRC) was established in 2015. It made an early and strong commitment to Public and Patient Involvement (PPI) in all its work. That commitment was made manifest through the immediate appointment of Lay and Researcher Leads and an administrator to develop and implement a scheme of PPI. At the core of the scheme was the allocation to each of the centre's four themes two Research Partners (RPs), who were to offer routine and strategic support to researchers but also to have a wider ambassadorial role, acting as champions for PPI. The RPs were appointed through a full recruitment process and supported financially, with a 'budget' of 10 half days per annum, with training where needed and supported by a mentor. Their core tasks were defined through an audit of then current practice in PPI within the themes. Monitoring of progress was undertaken at regular group PPI meetings, reports to the centre's funders against key performance indicators and against a rerun of the initial audit. A library of documents was produced to support this work, including a centre policy statement, procedures for the recruitment, training and support of RPs, a partnership agreement between RPs and researchers and a mentorship agreement. Most recently procedures have been drafted to assess the impact on research of PPI. The scheme has been regarded as largely successful by researchers, RPs and the Centre's External Advisory Board. However there remains much to do to ensure consistently high quality involvement of RPs in the centre's research. A significant stumbling block to making progress has been the lack of time given to researchers by funders to become involved in PPI. A reflection on progress against the UK Standards for PPI has identified a number of key actions for the future. They include the roll out of a scheme to assess the impact of PPI and to increase diversity in the centre's pool of RPs.