Biographical value: towards a conceptualisation of the commodification of illness narratives in contemporary healthcare

Abstract

Illness narratives play a central role in social studies of health and illness, serving as both a key theoretical focus and a popular research method. Despite this, relatively little work has gone into conceptualising how and why illness narratives -be they in books, websites, television or other media -are commodified in contemporary healthcare and its social environment; namely, how distinctive forms of value are generated in the production, circulation, use and exchange of illness narratives. In this article we propose the notion of biographical value as a first step towards conceptualising the values attributed to illness narratives in this context. Based on a secondary analysis of 37 interviews with people affected by 15 different health conditions in the UK (all of whom have shared their illness experiences across various media) and drawing on understandings of value in research on the bioeconomy and the concept of biovalue in particular, we sketch out how epistemic, ethical and economic forms of value converge and coconstitute each other in the notion of biographical value and in broader economies of illness experiences.

The barriers, benefits and facilitators of leisure time physical activity among people with spinal cord injury: a meta-synthesis of qualitative findings

“…As Mazanderani et al (2013) explain, the stories told by people with real life experiences are of value because they contain an 'embodied source of knowledge ' (p.897). In other words, people are more likely to value the advice given to them from peers because this knowledge comes from the lived experience of SCI of having and being an impaired body.…”

Examining the role of patients’ experiences as a resource for choice and decision-making in health care: a creative, interdisciplinary mixed-method study in digital health

“…66 Owing to the lack of research on the sixth and seventh domains, they were selected for further secondary analysis. 55,64,65 In our secondary analysis we found both variations and similarities between how people affected by different conditions used the internet and responded to PEx. This is significant, as a great deal of current research on health-related use of the internet is condition specific and hence unlikely to pick up on wider cross-condition trends and differences.…”

“…55,64 The second, focused on issues around the sharing of PEx, explored the 'value' that people who actively shared their experiences attributed to doing so. 65 In the second strand, drawing on the theoretical framework outlined in the previous chapter (WP1a), LK conducted further analysis to generate an item pool for the development of the eHIQ. This secondary analysis enabled the incorporation of internet users' actual words as a basis for questionnaire items and helped enhance content validity of the assessment tool.…”

“…Much of the research discussed here has been published elsewhere. 55,[64][65][66] To avoid duplication, we do not go into the details of published work, but rather (1) provide a high-level overview of the findings from stage 1 of the secondary analyses that have not been published elsewhere and (2) summarise and contextualise key findings from both strands of stage 2 (which have been published) in relation to this wider secondary analysis.…”

“…In the first round of secondary analysis, we noted a number of cases in which interviewees reflected on why they had chosen to share their experiences and what they thought the effects of this had been on themselves and on others. To explore this topic, we selected additional interviews where this had been elaborated on in more depth and subjected them to a further round of analysis (for more detail on our sampling approach see the full account of this research, published elsewhere 65 ). A significant portion of what we found related to the emotional and therapeutic benefits of peer support.…”