Following on from the first paper from the project, a second peer-reviewed academic journal article based on research undertaken for the Mix & Match project has now been published. The article is entitled ‘Improving the odds for everybody’: Narrative and media in stem cell donor recruitment patient appeals, and the work to redress racial inequity.
Because this research has been funded by the Wellcome Trust, the article is entirely Open Access. This means that you can read it online, or download the article, without a paywall.
The article focuses on the accounts of individuals (both patients and families) who have experienced a ‘patient appeal’ to recruit stem cell donors. Patient appeals are, in general, a combination of running in-person events to recruit stem cell donors through ‘donor drives’ (where people come to a stand and swab their cheek/complete a form to register as a donor), and media engagement (often both through traditional mass media and social media) to amplify the appeal to encourage further people to hear about donor registration and sign up.
In recent years, perhaps partly because of the expansion of social media, patient appeals have become more numerous, and registries around the world see large numbers of new registrants sign up because of them. Importantly, these registrants – in the unlikely event they are called up to donate – are most likely to be a future patient’s match, not the match of the patient around which appeal is framed. This is partly because of the exact genetic matching that makes the odds of finding one’s own match in this way very small, but also because of the time it takes to add donors to registries, which may take multiple weeks.
The article explores what it is like to run an appeal in practice, focused predominantly on some of the challenges (particularly the effort of appeal work, but also the personal exposure it can bring). It also focuses on how patient appeals become something undertaken for the collective good, given the small chances of it rendering a match for the appeal focus herself or himself, and considers how this is wrapped up in the racial inequity of the existing system, which means racially minoritised patients are less likely to find their optimal match on the registry and, thus, probably more likely to be the patients faced with the option of running a patient appeal.
The goal of this paper is to act as the evidence-base for a document that will ultimately be available to future patients and their families, who may have heard of the idea of running a patient appeal. The document will not simply explain what patient appeals are, but also give honest, evidence-based insights into the positives and negatives of those who have already gone through the process themselves. An early conference version of the paper has already been cited in the recent APPG report discussed here, which suggests that policy makers and registries are also interested considering what the welfare and safeguarding issues around patient appeals might be.
As the paper notes in the acknowledgements section, I want to again extend my gratitude to all the patients and families who have spoken to me for the purposes of Mix & Match. Your honesty and candour have been crucial in painting what I hope is a realistic sense of what running a patient appeal can feel like for those behind one.