The issues surrounding Patient and Public Involvement in UK Health Research are examined by Dr Mary Madden (University of Leeds) and Dr Ewen Speed (University of Essex) in a recent article published in Frontiers in Sociology
What is Patient and Public Involvement? What prospects does it have in different contexts?
Patient and Public Involvement (PPI) in UK National Health Service (NHS) research has, in the UK, become an imperative in policy and practice. But, as Dr. Mary Madden and Dr. Ewen Speed argue in their article, ‘Beware Zombies and Unicorns: Toward Critical Patient and Public Involvement in Health Research in a Neoliberal Context’, it is not clear what PPI is, or how it should be used effectively.
Patient and Public Involvement in health research can take many forms; formal or informal, spontaneous or planned, with patients as both gatherers and sources of data. This can lead to some positive outcomes, increasing democratic accountability while improving patient understanding and engagement with health research and evidence. However, Dr. Madden and Dr. Speed argue that there is a very real danger of PPI being ineffective and tokenistic.
More clinical research does not necessarily lead to better standards of health. Madden and Speed claim if clinical research is to improve patient care then it also needs to consider outcomes in real-world settings. To do this, there is a growing awareness that patients and other stakeholders need to be included in health research and this needs to be done in meaningful and appropriate ways. There is ‘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 requirement to involve patients and the public coincides with the radical reorganization of healthcare, where health policy is increasingly subject to the demands of market-led competition and the threat of privatization. PPI emerges in this context, amidst claims it provides insight to help improve outcomes and guarantees no community is disadvantaged. However, these claims are contested, since ‘there is no guarantee that participation “per se” improves outcomes or addresses the causes or effects of disadvantage.’ The complexity of public involvement, comprising a range of vested interests and a variety of formats means that a definition of PPI is conceptually and theoretically hazy. ‘It can mean anything (and nothing) and serve a variety of purposes. In a competitive health research market, prioritizing the perspectives of consumers directly affected by certain conditions has wider implications for public health and public resource distribution. ‘
Different models of PPI provide different ideas of how it should take place and who it should involve. Diverse motivations for PPI can be identified: the pragmatic, that aims to impact the quality of research, and the ideological, that is focused on democratic representation. There is an apparent confusion here between different agendas, particularly where consumers of healthcare are concerned. ‘As Dean (2017) points out, the empowered self-interest of the neoliberal consumer-citizen is somewhat at odds with the “other-oriented, reasoning-citizen of deliberative democracy,”’
Moreover, Madden and Speed express concerns that PPI risks turning consumers of healthcare into commodities, and reducing the opportunities available for real engagement with patients. ‘The potential for the conflictual nature of democratic politics is underplayed, as the nature of the public good is reduced to a matter of personal preference and individual experience. In this context, PPI “experts by experience” are in danger of being reduced to another commodity, as an opportunity for professionals to consume affective individual testimony without the need to engage with wider publics or more contextualized forms of research.’
PPI, they claim, ‘operates as an empty signifier, intermittently populated with whatever policy ideas of citizen engagement are a la mode’. PPI and health policy making can be depicted as inhabited by zombies and unicorns. Zombie ideas, ‘offering (but never providing) a solution to purported deficits in democratic engagement’, despite being endlessly killed off as useless in the last policy round, and a unicorn policy, ‘a mythical beast, prevalent, and much discussed but never discovered in replicable form in any health-care system.’
Madden and Speed say PPI is part of a wider politic, where patients are becoming consumers of healthcare through public and private funds and the value of the public good is shifting to benefit private individuals. ‘This zombie/unicorn hybrid creates PPI as a form of busywork in which the politics of social movements are entirely displaced by technocratic discourses of managerialism.’ Involvement should be about populations engaging in the decisions that impact their lives, identifying opportunities and strategies for action ’. In the context of rising health inequalities, PPI should be about accountability and positive action to re-engage and identify what people most want and need.