Abstract
Patient and Public Involvement (PPI) in UK National Health Service (NHS) research has become an imperative in policy and practice. However, lack of clarity on what PPI is (or might be) has given rise to a poorly monitored, complex field of activity, variously framed by the expectations of policy makers, funders, host organisations, researchers, health professionals, individual recruits, volunteers, activists and third sector organisations. The normative shift towards PPI has taken place within a neoliberal policy context, the implications of which needs to be explicitly considered, particularly after the Brexit referendum which has left policy makers and researchers wondering how to better appeal to a distrustful public subjected to ‘post-truth’ and ‘dog whistle’ politics. This commentary examines the prospects for a more critical approach to PPI which addresses context, is evidence-informed and mindful of persistent inequalities in health outcomes, at a time when models of PPI in NHS health research tend to be conceptually vague, derived from limited clinical and managerial settings, and centred on a construction of the abstract, rational, compliant and self-managing patient or lay-person.
Highlights
Patient and public involvement (PPI) in health research can be spontaneous or planned, invited or sponsored, with citizens engaging in a range of ways, from being compliant data gatherers, sources of data or legitimization, to user leaders and makers of challenging theory (Wehling et al, 2015)
Narratives of experience are structured, performative, means of understanding, and persuasion, not an unproblematic means of transparent access to truth. Those asked to narrate their experience are subject to the quest for particular forms of expert, but not too expert, experience (Martin, 2008; Thompson et al, 2012; Snow, 2016). It is in this context that we assert that PPI operates as an empty signifier, intermittently populated with whatever policy ideas of citizen engagement are a la mode (Stewart, 2012)
Maynard (2012) depicts contemporary health policy making as Nirvania, a land of faith inhabited by zombies and unicorns
Summary
Patient and public involvement (PPI) in health research can be spontaneous or planned, invited or sponsored, with citizens engaging in a range of ways, from being compliant data gatherers, sources of data or legitimization, to user leaders and makers of challenging theory (Wehling et al, 2015). In the US, the Patient-Centered Outcomes Research Institute has been established as an independent non-profit, nongovernmental organization to improve the quality and relevance of evidence available and so aid better-informed health decisions.. The JLA has its origins in the evidence-informed health-care movement rather than formal National Health Service (NHS) and NIHR PPI policy or patient/service user movements and has had limited engagement with industry in its processes because commercial interests may not align with scientific or public interests. This commentary is a provocation stemming from a concern that the investment of time and resources in much mainstream UK PPI in applied health research is taking a form of “busywork,” i.e., a time-consuming technocratic distraction. The NHS has been radically reorganized and spending on key determinants of health has fallen as a result of postcrash austerity policies
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