Developing patient reference groups within general practice: a mixed-methods study

Background - Clinical commissioning groups (CCGs) are required to demonstrate meaningful patient and public engagement and involvement (PPEI). Recent health service reforms have included financial incentives for general practices to develop patient reference groups (PRGs). Aim - To explore the impact of the patient participation direct enhanced service (DES) on development of PRGs, the influence of PRGs on decision making within general practice, and their interface with CCGs. Design and setting - A mixed-methods approach within three case study sites in England. Method - Three case study sites were tracked for 18 months as part of an evaluation of PPEI in commissioning. A sub-study focused on PRGs utilising documentary and web-based analysis; results were mapped against findings of the main study. Results - Evidence highlighted variations in the establishment of PRGs, with the number of active PRGs via practice websites ranging from 27% to 93%. Such groups were given a number of descriptions such as patient reference groups, patient participation groups, and patient forums. Data analysis highlighted that the mode of operation varied between virtual and tangible groups and whether they were GP- or patient-led, such analysis enabled the construction of a typology of PRGs. Evidence reviewed suggested that groups functioned within parameters of the DES with activities limited to practice level. Data analysis highlighted a lack of strategic vision in relation to such groups, particularly their role within an overall patient and PPEI framework). Conclusion - Findings identified diversity in the operationalisation of PRGs. Their development does not appear linked to a strategic vision or overall PPEI framework. Although local pragmatic issues are important to patients, GPs must ensure that PRGs develop strategic direction if health reforms are to be addressed