School of Rehabilitation Sciences, Faculty of Health Sciences, University of Ottawa, Ottawa, Ontario, Canada.
School of Nursing, Faculty of Health Sciences, University of Ottawa, Ontario, Ottawa, Canada.
J Eval Clin Pract. 2023 Aug;29(5):700-708. doi: 10.1111/jep.13823. Epub 2023 Mar 7.
A 'patient-oriented' research paradigm, also known as patient and public engagement, has infiltrated the field of health sciences and continues to spread. At first blush, it is difficult to reprove anything labelled 'patient-oriented'; however, the patient-oriented paradigm may easily become an ideological 'good', leading to unintended consequences that may well prove more detrimental than beneficial. While patient-oriented research has its roots in more radical forms of patient and public engagement, its recent instantiation betrays its roots and forecloses on more radical forms of engagement, such as critical participatory research.
The objective of this article is to deconstruct the patient-oriented research narrative and to demonstrate how such a discourse imposes itself as a dominant approach in health sciences.
Following Derrida's deconstructive approach, we bring to light the unexamined presuppositions, false pretences, and presumed 'goodness' and 'naturalness' of patient-oriented discourse.
By deconstructing the patient-oriented narrative we demonstrate how pre-existing power structures (biomedical, economic, etc.) shape the conduct of the approach and serve to depoliticize the truly participatory aspects of research. Rather than being modelled on the evidence-based movement or seen as its natural 'evolution', patient-oriented research should resist by affirming itself as a radical form that is both participatory and emancipatory.
一种被称为患者和公众参与的“以患者为中心”的研究范式已经渗透到了健康科学领域,并在继续蔓延。乍一看,很难反驳任何被贴上“以患者为中心”标签的东西;然而,以患者为中心的范式可能很容易成为一种意识形态上的“好事”,导致意想不到的后果,这些后果很可能弊大于利。虽然以患者为中心的研究源于更激进的患者和公众参与形式,但它最近的实例却背离了其根源,并排除了更激进的参与形式,如批判性参与式研究。
本文的目的是解构以患者为中心的研究叙述,并展示这种话语如何将自己强加为健康科学中的主要方法。
根据德里达的解构方法,我们揭示了以患者为中心的话语中未经审查的假设、虚假的借口以及假定的“好”和“自然”。
通过解构以患者为中心的叙述,我们展示了预先存在的权力结构(生物医学、经济等)如何塑造方法的实施,并使研究的真正参与性方面失去政治色彩。以患者为中心的研究不应被视为基于证据的运动的模式或其自然“演变”,而应通过肯定自己是一种既具有参与性又具有解放性的激进形式来抵制。