In search of experiential knowledge

Blume, Stuart

doi:10.1080/13511610.2016.1210505

Cited by 46 publications

(71 citation statements)

References 20 publications

(12 reference statements)

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“…'Distillation' refers to the process of ordering and filtering lived experience into a comprehensive body of knowledge (Bulme, 2016). For Melissa and Faye, this ordering involved the construction of experiential knowledge as incrementally valuable, accumulating and retaining status in a linear manner.…”

Section: Resultsmentioning

confidence: 99%

“…The decline of paternalistic models of medicine, the paralleled increase in, and emphasis on, personalised medicine and patient organisations together with the gains made by both the feminist and disability rights movement since the 1970s have all contributed to the expanding value placed on the realm of the experiential as a resource with which to supplement, supplant or challenge medical knowledge (Abel and Browner, 1998;Frank, 1995;D'Agincourt-Canning, 2005;Williams and Popay, 1994;Bulme, 2016;Baillergeau and Duyvendak, 2016;Rabeharisoa et al, 2014;Britten and Maguire, 2016;Boardman, 2014).…”

Section: Introductionmentioning

confidence: 99%

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Experience as knowledge: Disability, distillation and (reprogenetic) decision-making

Boardman

2017

Social Science & Medicine

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a b s t r a c t 'Experiential knowledge' is increasingly recognised as an important influence on reproductive decisionmaking. 'Experiential knowledge of disability' in particular is a significant resource within prenatal testing/screening contexts, enabling prospective parents to imagine and appraise future lives affected by disability. However, the concept of 'experiential knowledge' has been widely critiqued for its idiosyncrasy, its impermanence and consequently its perceived inferiority to (medical) knowledge. This paper explores some of these key critiques of experiential knowledge through an analysis of its constitution and uses in the context of reproductive decision-making. Seventeen UK-resident women with Spinal Muscular Atrophy (SMA), or with SMA in their family, took part in two in-depth interviews: one in 2007 e9 and the other in 2013e4. By comparing and contrasting these women's accounts at two time points, this paper demonstrates the stark contrast between 'lived experience' of SMA (the visceral everyday realities of life with the condition) and the various way(s) this experience was transformed into, and presented as, 'knowledge' through the processes of making, and accounting, for reproductive decisions. The analysis highlights that multiple, distinct and sometimes competing experiential frameworks are used to conceptualise SMA across time and context. However, rather than evidence of its fallibility, this finding highlights that 'knowledge' is an inappropriate vessel with which to capture and transfer 'experiential knowledge'. Rather, we need to consider how to value such insight in ways that harnesses its inherent strength without leaving it vulnerable to the epistemological critiques attracted by labelling it 'knowledge'.

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Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Experience as knowledge: Disability, distillation and (reprogenetic) decision-making

Boardman

2017

Social Science & Medicine

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“…Even though the rhetoric of listening to patients is pervasive, he argues their "experience is treated as authoritative, as worthy of being characterized as 'knowledge' only to the extent that it appears compatible with medical knowledge and assumptions. " 5 When patients and their organisations depart from conventional ways of thinking, their status in the medical-industrial complex tends to be significantly diminished. A recently published account by Sharon Batt 6 illustrates how when patient advocates' think seriously about conflicts of interest in pharmaceutical industry sponsorship, they can meet hostility from other patient advocates.…”

Section: Troubling the Rise Of Patient Advocates And Organisationsmentioning

confidence: 99%

The Pandemic, Patient Advocacy, and the Importance of Thinking Comment on "The Rise of the Consucrat"

O’Donovan

2020

Int J Health Policy Manag

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The profound inadequacies of Western modernist ways of thinking have been revealed by the intimately connected catastrophes of climate destruction, and more recently, the coronavirus crisis. The pandemic has forced us to notice deepening inequalities and has generated troubling questions about its causes, and who and what can be sacrificed in a pandemic. The analysis offered in Evelyn de Leeuw’s essay "The rise of the consucrat" suggests that the particular type of patient advocates she calls consucrats are unlikely to engage in thinking together about these urgent questions. If anything, due to their narrow biomedical focus and alliances with the pharmaceutical industry, they are likely to facilitate catastrophe capitalism. However, within the field of patient advocacy, there is a diversity of ways of thinking, occasionally leading to bitter contention. A number of terms is needed to reflect this diversity. One group of patient advocates who have come to the fore in recent times might be called medical cosmopolitans, or cosmedics, those who are challenging opportunistic catastrophe capitalism during the pandemic and advocating for global access to essential medicines. Forcing us to notice our deep interdependencies and entanglements, the pandemic has revealed how ludicrous it is to think about patients as consumers, and the need to think about and imagine more-than-human patient advocacy.

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“…Today, experience is widely recognised as a form of knowledge and expertise, as indicated by the pervasive use of terminology such as 'experiential knowledge', 'expert patient' and 'expert-by-experience' in policy documents and patient involvement initiatives (Greenhalgh, 2009;Noorani, 2013;Toikko, 2016). However, there is little consensus on what experience(s) should be considered knowledge (Pols, 2014;Blume, 2017). Questions about whose lived experience is represented, how and by whom are often raised in relation to initiatives aimed at increasing public and patient participation (Horner, 2016: 15-16).…”

Section: Introductionmentioning

confidence: 99%

Knowledge, evidence, expertise? The epistemics of experience in contemporary healthcare

Mazanderani

Noorani

Dudhwala

et al. 2020

Evidence &Amp; Policy

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This paper explores how personal experience acquires the status of knowledge and/or evidence in contemporary healthcare contexts that emphasise being both patient-centred and evidence-based. Drawing on a comparative analysis of three case studies ‐ self-help and mutual aid groups; online patient activism; and patient feedback in healthcare service delivery ‐ we foreground: a) the role that different technologies and temporalities play in how experience is turned (or fails to be turned) into knowledge or evidence; b) the role that experts-of-experience, in addition to the more frequently referenced experts-by-experience, play in mediating how, when and why experience is turned into an epistemic resource; and finally, c) how the need to be ‘evidence-based’ remains a persistent, yet at times productive, challenge to how patient and user experiences are incorporated in contemporary healthcare policy and practice. Throughout the paper, we argue that it is necessary to look at both democratic and epistemic imperatives for including patient and service users in healthcare services and policymaking based on their experience.

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In search of experiential knowledge

Cited by 46 publications

References 20 publications

Experience as knowledge: Disability, distillation and (reprogenetic) decision-making

Experience as knowledge: Disability, distillation and (reprogenetic) decision-making

The Pandemic, Patient Advocacy, and the Importance of Thinking Comment on "The Rise of the Consucrat"

Knowledge, evidence, expertise? The epistemics of experience in contemporary healthcare

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