Patient-centricity: Research's new shibboleth?

Abstract

Turcotte, Holmes and Murray1—hereafter ‘the authors’—critique ‘patient-centred’ research (PCR) by using Derridian deconstruction to argue that PRC is vulnerable to capture by commercial, professional and political interests embedded within neoliberal bureaucracies, and that the structure and governance of much publicly-funded research perpetuates the hegemony of professional researchers. The authors outline how on one hand, PCR may be a means of increasing the relevance of biomedical research to individuals and groups; while on the other it may also be a means of controlling and directing participation, design and assessment of the outputs of research and submitting to the interests of research funders and other stakeholders. From this perspective, patient-centricity is characterised as disingenuous and tokenistic—a means for perpetuating existing power imbalances under the guise of socially responsible, democratised research. Further, the authors contend that this construction simultaneously and covertly attends more to the political needs of funding bodies, and also the politicised process of capturing ‘bottom-up’ research endeavours—‘nomad science’—by politically-authorised mainstream researchers who represent ‘Royal Science’. Medical research's privileged position within ‘Royal Science’ is summarised by O'Mahony thus; ‘medical research has become a global business and driver of economies; it is the intellectual powerhouse of the medico-industrial complex’.2 We have considerable sympathy with the views expressed by the authors that patient-centricity in research may be used as a trope, may be inherently exploitative (‘helicopter’ research), and may mask research whose outcomes serve the interests of researchers more than those of patients. At the same time, we think it is an over-simplification to characterise person-centric research as (merely) a covert and malign exercise of power by biomedical researchers either attempting to exert hegemonic control over the design, conduct, execution and dissemination of research or a cynical ploy to maximise their access to research funding. Biomedicine is inextricably concerned with the utilisation of metrics, more often quantitative (but increasingly qualitative) to generate methodologically sound research outputs on which evidence-based health care is based. Research proposals, at least when they are seeking access to public funding, must be evaluated by funding bodies using metrics of some kind to assess their scientific merit, impact and feasibility, both to maximise the public benefit of research and to avoid criticism that funding decisions are arbitrary, biased or irresponsible.3, 4 Evidence based health care (and of necessity the research that underpins it) has been subjected to both soft and strong critiques. The soft approach articulates a view that is critical but none the less ‘optimistic about the possibilities for addressing the perils of reductionism’.5 In contrast, the authors take a much more critical position. Drawing upon the anti-foundationalist philosophical frameworks of Heidegger, Foucault, Deleuze and Guattari5 and specifically that of Derrida, they argue that person centric research may pose a threat to the exclusion of ‘selfhood, despite its formal commitment to the contrary’.5 The authors question whether the metrics applied to reflect person/patient involvement in research are illusory and subject to manipulation and misrepresentation to serve interests that have little to do with those of patients or communities.6 lack definitional clarity and be tautological in both conception and application; be aligned with neoliberal conceptions of citizenship, rational consumerism and pervasive self-improvement imperatives of health systems; be influenced by neoliberal imperatives which define conceptions of what is socially responsible, and; be vulnerable to tokenism, governance and governmentality. Whilst we have considerable sympathy with the views expressed by the authors that the incorporation of patient-centricity into research proposals may, at times, be meaningless at best or duplicitous at worst, we posit that ‘deconstructing’ PCR does not lead inevitably to a unifocal understanding of PCR as a malign means of capture, control and manipulation of the epistemology, conduct or translation of research. Rather, we suggest that, as is the case with person centric health care, while the epistemology of PCR broadly aligns with humanistic care, the enactment of PCR through the policies and processes surrounding the funding, execution and implementation of research may serve other ends. Person centricity implies ‘true partnerships rather than simple engagement’, defining the values and principles underpinning the research (these being ‘co-creation, reciprocity, trust, fostering relationships, respect, co-learning, active participation, shared decision-making in the generation and application of knowledge’), the essential components and processes of the research, collaboration in the orientation of research rather than purely methodological collaborations rather than research methods, and understanding that such activities necessitate allocation of time and financial investment to embed person-centricity in research.7 However, the language of PCR is replete with various euphemisms including ‘integrated knowledge transfers’ and translation,7, 8 this being ‘a model of collaborative re-search, where researchers work with knowledge users who identify a problem and have the authority to implement…research recommendations’.8 Despite this over-arching conceptualisation, there are considerable differences in various forms of ‘collaborative research’. These relate to the original purpose and disciplinary origin of the research, degrees of partnership and engagement relating, inter alia, to the various participants’ roles in the production of research. (i.e. role of partners etc.). The degree of a research project's ‘person-centricity’ lies on a broad continuum rather than being a binary variable of ‘person-centric’ research on one hand, and ‘non-person centric, or, in the authors’ terms ‘Royal’ versus ‘nomad’ research on the other. Previously we have examined person-centric care as a tautological concept in so far as the ultimate ends of medical care relate squarely to patient benefits,6 and one cannot mount an ethically defensible argument against the notion of person-centric care.9 This same critique of person centric care can also be broadly applied to PCR as PCR is fundamentally designed to be implemented in health care settings. Further, to speak of PCR as paradigmatically new or novel implies that prior forms of research were either not or were insufficiently motivated by sensitivity to the ‘values, autonomy and cultural backgrounds of patients and their families’.10 In this regard, if one leaves aside well-known instances of demonstrably unethical and culturally imperialist research11 it is difficult to argue that the vast majority of research is genuinely indifferent to participants, unkind, disrespectful, causes injustice and antithetical to humanistic values. This is particularly true following the global movement to establish independent oversight of research, with IRBs and HRECs being charged with ensuring research participants' safety and the protection of their interests.12, 13 Indeed, while we would agree that the coercive imperatives of ‘Royal Science’ may seek to direct and control both the design and conduct of research and the recruitment and selection of research participants, HRECs and IRBs have a social mandate to work in the interests of vulnerable communities and individuals and prevent exploitation. In recent years, participatory action research has been proposed as one means by which the problems associated with ‘top-down’ design, methodology, publication and interpretation of research results—particularly in relation to surrogate outcomes of interest to researchers, which may be of passing relevance to patients' lives—may be overcome.14 Indeed, it is arguable that participatory methods ‘have become the new Zeitgeist—the spirit of our times in quality improvement’.15 It is crucial, therefore, as the authors identify, that the ‘false pretences, and presumed “goodness” and “naturalness” of patient-oriented discourse’ are carefully examined to avoid the very same issues that beset current biomedical research; those of ‘validity, reliability, and generalisation’,16 so that any activity described as person-or patient centric research is prima facie beyond critique, belonging to ‘some abstract realm in a sanctuary of science, far removed from the interactions of the everyday world, to be worshipped with respect by all true believers in science’.16 In this regard we would endorse the authors' warning that participatory action research may be instrumentalized and subordinated to ‘market discipline’ and thereby appropriated by ‘Royal Science’ to advance its own ends, such that claims of ethical codesign and community participation are simply a façade that hides the perpetuation of epistemic injustice.17 Patienthood versus personhood is the basis for inclusion in PCR. The authors emphasise that patienthood is a biomedical concept, defined by ‘Royal Science’ and the associated epistemology of disease and illness is equally applicable for nonpatient advocates who may also form part of the ‘stakeholder’ group. Inherent in the authors' proposition is that participants may be suborned into the process and enterprise of research as their involvement requires their acquiescence to be a component of the metrics by which the fundability of research is determined. It is also the case that there is a vulnerability to tokenism in PCR. Tokenism has long been recognised in Indigenous research in Australasia and elsewhere—described as ‘helicopter research’ or ‘safari studies’ where there an exploitative rather than participatory relationship between researchers and research subjects as a result of incommensurable epistemologies,18 typically between First Nations people and Western researchers. To avoid tokenism community action participatory action research is characterised by a slow and deliberate process of trust generation and negotiation. In essence this is informal, not time-constrained and iterative. Hence there is a fundamental political aspect of PCR in that it attempts to achieve a political constituency or clientele of consumers, and hence a mandate for research that will justify its support. Yet, akin to the problem of implementing EBM at the individual patient level, the collective output of person-centric research must be deployed by a health care practitioner or team in a manner that is salient for one person (or client/consumer). Patients qua consumers (who may also be research ‘stakeholders’) occupy a particular stance in Western societies as rational economic actors engaged in a ‘continual search for knowledge’ in the quest for self-improvement. These individuals ‘must continually make decisions from a variety of options as part of everyday life…(and) experience self, the body and the social and physical worlds with a high degree of reflection, questioning, evaluation and uncertainty’.19 Their self-reflexive stance, therefore, at least to some extent, eschews medical hegemony. The inclusion of patient/consumer participation in research may be evaluated via measures of ‘stakeholder engagement’—metrics that permit one proposal to be counted as showing greater engagement than others, designed to, inter alia, influence funding decisions. Yet, as even proponents of these metrics acknowledge, whilst ideally the contrary should be true, ‘it is conceivable that sophisticated structures that appear designed to engage stakeholders could be employed with no intent to share power or use information… Genuineness of intent is not something that is stated but rather demonstrated all along the course of a project by collaboration in important decisions, e.g., who decides how the project budget will be spent, or if changes need to be made, who decides?’.20 The authors take an even stronger position, that where this occurs it is a consequence not of simple pragmatism or cynicism, but as a manifestation of ‘Royal Science's’ desire to exert power and control. Ironically, the turn to PCR may have malign consequences even where the intention to engage persons/consumers in the codesign of research is genuine and is aimed at democratising research.21 For, just in the same way that EBM has ‘colonised’ the practice of health care as a an apodictic self-evident and self-justifying good, PCR threatens to colonise research, deprioritising other forms of research, diminishing other discourses and creating a dogma that must be adhered to irrespective of the context or question.22 ‘Market subjectivity’ has been identified as a governmental discourse that is evident in the academy through the commodification of students as consumers,23 the diversification and maximisation of market share,24 and the accrual of profit (or the achievement of liquidity-sustainability). Universities must be able to remain ‘going concerns’ when insufficiently supported by public funding determined by neoliberal Governmental policies and imperatives to efficiency.25 In turn, this necessarily extends to the research conducted by the academy, since investigator-initiated research is costly, and is considered an economic good that affects institutional liquidity and solvency.26 It is conceivable therefore, that person-centricity and community engagement could become a discourse through which research subjects may be commodified as a resource that may be harnessed in a manner that contributes to the research performance of the academy. Indeed, characterising and defining patient research participants as stakeholders recreates the language of research as that of the market, and consumer empowerment and patient research participants who direct research activities as ‘rational economic agents’. It is here that in the authors' terms, the hegemonic control of ‘Royal Science’ may be seen as a response to neoliberal higher educational funding policies. PCR may, in this regard, be seen as a form of internalised managerialism or governmentality as, even in the act of providing persons (stakeholders) with the power to initiate and influence research, PCR may be captured in a process of assembling (but ultimately exploiting) a ‘democratic plurality of actors while reinforcing unobtrusively the power of the inner circle’.27 In this sense, patients qua consumers are the ‘clients’ of PCR. Research elites comprising ‘Royal Science’ attain power over the research by providing an alternative solution and rationality to ‘legitimate the concrete use of power’.27 Hence PCR is a collective good justified by the rhetoric of public accountability,28 and likewise justifying its public funding and merit by assessment using approved metrics of ‘person-centredness’ and by submission to social control and governance by ‘Royal Science’.29 In recent years socio-cultural, ethical and political imperatives have driven efforts to assess the ‘effectiveness’, ‘practical’ outcomes or ‘impacts’ of research when applied to health care.6, 30 While it is often stated that the merits of impact assessment are self-evident and serve to further the democratisation of science, as Aubin and others have noted, ‘many authors are still trying to prove its merit, while others are attempting to invalidate assumptions regarding the value of the approach’.30 Here, a circulus in probando argument pertains to the effects of PCR in so far as there are efforts to ‘build evidence of impact’ and to establish a ‘foundation’ with which to convince ‘health researchers and patients of its merit’. This is akin to constructing the research question, primary and secondary outcomes after measuring ‘what is feasible to measure’.30 There is a clear analogy between this approach and adopting measures of satisfaction to prove the effectiveness of person-centric health care as a proxy for quality.6 This is a ‘no true Scotsman’ (appeal to purity) informal fallacy31 that no ‘true’ researcher' or one wishing to merit funding could ignore. By excluding the counterargument, this is an epistemic failure common to EBM, PCH and PCR. Turcotte, Holmes and Murray's ‘deconstruction’ of patient-centric research1 highlights how an apparent commitment to valuing the humanity of research participants may be captured to serve the interests of researchers through funding and governance mechanisms that may paradoxically disempower patients. We agree with the authors' contention that research which does not serve the public interest—particularly a public with a vested interest in that research—should not be supported by funding bodies. We suggest however, that a Derridian deconstruction of patient centric research does not necessarily arrive at the conclusion that patient participation in research is either overly or covertly controlled at all phases by the hegemon, ‘Royal Science’. That said, we should not be naïve about the extraordinary ways in which professional, political and commercial interests have maintained controlled over research, particularly in clinical settings, and we should remain alert to this possibility and strenuously reject it. Open access publishing facilitated by The University of Sydney, as part of the Wiley - The University of Sydney agreement via the Council of Australian University Librarians. The author has provided the required Data Availability Statement, and if applicable, included functional and accurate links to said data therein.