How can patients influence service improvement decision-making? a participatory research mixed methods study

Abstract

Background: Health policy promotes patient participation in decision-making about service organisation. In English general practice this happens through contractually required patient participation groups (PPGs). However, there are problems with the enactment of PPGs which have not been systematically addressed. Aim: To observe how a co-designed theory-informed intervention can increase representational legitimacy and facilitate power-sharing to support PPGs to influence decision-making about general practice service improvement. Design and Setting: Participatory action research to implement the intervention in two general practices in the North of England. The intervention combined two different participatory practices; partnership working involving externally facilitated meetings with PPG members and staff, and consultation with the wider patient population using a bespoke discrete choice experiment (DCE). Method: To illustrate decision-making in PPGs qualitative data is presented from participant observation notes and photographed visual data generated through participatory methods. The DCE results are summarised to illustrate how wider population priorities contributed to overall decision-making. Observational data was thematically analysed using Normalisation Process Theory with support from a multi-stakeholder co-research group. Results: In both practices, patients influenced decision-making during PPG meetings and through the DCE, resulting in bespoke patient-centred action plans for service improvement. Power asymmetries were addressed through participatory methods, clarification of PPG roles in decision-making, and addressing representational legitimacy through wider survey consultation. Conclusion: Combining participatory practices and facilitated participatory methods enabled patients to influence decision-making about general practice service improvement. The policy of mandatory PPGs needs updating to recognise the need to resource participation in a meaningful way.