I presented an ongoing paper I’m developing from the project at this year’s European Sociological Association (ESA) conference, which was supposed to be held in Barcelona but which instead took place online!
The substance of the paper was similar to the BSA presentation I gave in the Spring which you can watch here, and the abstract is produced below. Other presentations in the panel, Health Inequalities I: Healthcare including discussions of health inequalities in Belgium, Poland and Greece, and in contexts like community pharmacy and of the effects of economic crises on accessing healthcare.
“Everything to Gain and Nothing to Lose?”: Patient campaigners, racialised inequity, and stem cell donor recruitment
Blood or bone marrow stem cell transplantations are a treatment for a number of blood malignancies like leukaemia. Whilst many people find a match on existing donor registries, others do not. Often, it is patients racialised as minority ethnic who end up without a donor. In recent years, increasing numbers of these individuals and their families are turning to social media to amplify a message encouraging people to register as stem cell donors. They aim to locate their own donor, whilst also diversifying the stem cell registries more broadly for future minoritised patients. These efforts are key to understanding the intersection of new digital and ‘traditional’ media, and health inequities activism.
This paper builds on recent empirical work on health-related online crowdfunding, and more established literature on the role of health narratives. It offers analysis of semi-structured interviews with patients and families who’ve organised their own stem cell donor recruitment campaigns, as well as analysis of social media activity and ‘traditional’ media coverage of these campaigns. Data were collected for a Wellcome Trust Fellowship exploring minority ethnicity stem cell donor recruitment.
I argue for the importance of surfacing the vital work undertaken by these individuals. As part of this, I reflect on the ambivalence articulated by participants in deciding to expose one’s own personal narrative of suffering to an unknown networked public, with the hope of both saving one’s own life, and ameliorating the wider health inequity experienced by many minoritised people who need, but cannot access, stem cell transplantation.