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Epistemic in/justice in patient participation. A discourse analysis of the Dutch ME/CFS Health Council advisory process
Sociology of Health & Illness ( IF 2.7 ) Pub Date : 2021-06-17 , DOI: 10.1111/1467-9566.13301
Marjolein Lotte de Boer 1
Affiliation  

In healthcare settings, patient participation is increasingly adopted as a possible remedy to ill people suffering from ‘epistemic injustices’ – that is to their unfair harming as knowers. In exploring and interpreting patient participation discourses within the 2013–2018 Dutch Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) Health Council advisory process, this paper assesses the epistemological emancipatory value of this participatory practice. It reveals that in the analysed case, patient representatives predominantly offer biomedical knowledge about ME/CFS. They frame this condition as primarily somatic, and accordingly, perceive appropriate diagnostic criteria, research avenues and treatment options as quantifiable, objectifiable and explicitly non-psychogenic. This paper argues that such a dominant biomedical patient participatory practice is ambiguous in terms of its ability to correct epistemic injustices towards ill people. Biomedicalized patient participation may enhance people's credibility and their ability to make sense of their illness, but it may also undermine their valid position within participatory practices as well as lead to (sustaining) biased and reductive ideas about who ill people are and what kind of knowledge they hold. The final section of this paper offers a brief reflection on how to navigate such biomedicalized participatory practices in order to attain more emancipatory ones.

中文翻译:

患者参与的认知/正义。荷兰 ME/CFS 卫生委员会咨询流程的话语分析

在医疗保健环境中,患者参与越来越多地被采用作为对遭受“认知不公正”的病人的一种可能的补救措施——即他们作为知识者受到不公平的伤害。在探索和解释 2013-2018 年荷兰肌痛性脑脊髓炎 (ME)/慢性疲劳综合症 (CFS) 健康委员会咨询流程中的患者参与话语时,本文评估了这种参与实践的认识论解放价值。它表明,在分析的案例中,患者代表主要提供有关 ME/CFS 的生物医学知识。他们将这种情况主要视为躯体疾病,因此认为适当的诊断标准、研究途径和治疗方案是可量化的、可客观的且明确非心因性的。本文认为,这种占主导地位的生物医学患者参与实践在纠正对病人的认知不公正的能力方面是模糊的。生物医学化的患者参与可能会提高人们的可信度和理解自己疾病的能力,但也可能会削弱他们在参与实践中的有效地位,并导致(持续)关于谁是病人以及什么样的知识的偏见和还原性想法他们持有。本文的最后一部分简要反思了如何引导这种生物医学化的参与实践,以实现更多的解放性实践。
更新日期:2021-08-11
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