'Doing diagnosis differently': An exploration of vitality and technology in mental health

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How do new methods of detecting neurodegenerative disease map the 'person-in-time'? How do peoplecome to participate in techno-scientific projects that seek to track cognitive decline earlier and moreintensively than ever before (Leibing 2014; Boenink, Van Lente, and Moors 2016; Swallow 2019)? Whatethical and epistemic challenges do these new measurement and diagnostic practices bring? Inthis fellowship, I will draw on empirical, methodological, and conceptual insights from my PhD and postdocto develop a research programme to tackle these pressing questions.In my PhD, I argued that working against mainstream classifications of need created possibilities butcame at a cost. To produce eligibility and access to clinical care for underserved groups, voluntary careproviders articulated mental health needs in alternative, non-diagnostic ways. This required laborious negotiations across funders, internal values and interests, and wider matters of concern. It also producednew tensions between 'knowledge of' mental ill health and the indeterminate 'lived experience' ofservice users. In my post-doc, I am beginning to see how similar tensions might manifest in the contextof neurodegenerative disease. Where prevention and treatment trials demand the early detection ofAlzheimer's disease, there is a need to investigate the effects of using innovative technologies to detectsigns of the disease before it is diagnosed clinically (Milne et al. 2018) and the implications for inclusionin trials (Epstein 2008). How do recruitment and measurement practices shape, become shaped by, orconflict with the lives and subjectivities of research participants? Whose interests do they serve? Thisfellowship will enable me to 'follow' such empirical inquiries to a new field site and develop them into abigger programme of work, aligned to the UK Industrial Strategy on our ageing society and AI & data.As well as this empirical link between my PhD and emerging research, there are theoretical andmethodological threads running between them. In both, I adopt a 'vitalist' framework - currentlyreceiving much attention within medical anthropology/sociology - that theorises the dynamic relationsbetween mental (ill) health, environment, biology, and society (Canguilhem 1952/2001; Wahlberg 2018;Lupton 2019). To put this theory to work empirically, I have developed a methodological approachemploying visual and other 'live' methods (inspired by Goldsmiths scholars (Wakeford & Lury 2012)).Under the mentorship of Monica Greco, an expert in vitalist thinking, I will publish and build on my PhD togenerate 'live' ways to engage with spaces and temporalities within the mental health systems of a'hyper-cognitive' society (Post 2000). This will establish a methodological and theoretical toolbox toexplore themes of diagnosis, technology, and vitality in the field of Alzheimer's disease. A major outputwill be grant proposals that attend to the relations between lived time and the biology of diseasetrajectories when it comes to detecting neurodegenerative disease.The outputs combine academic publications from my PhD and post-doc work, user and publicengagement, and scoping for grant development. Scoping work will be in the MRC Dementias PlatformUK's "Deep and Frequent Phenotyping" (DFP) project: a perfect example of a research programmefocussed on assessment and detection (but not clinical diagnosis) of a psychiatric condition. With thesupport of the DFP principle investigator, and my third mentor (an ethical advisor to the study) I willimmediately be ready to engage scientists, researchers, participants and wider communities that havestakes in this research. Impact and engagement activities will be closely linked to the scoping work andacademic outputs. I will run both public and user engagement workshops to set priorities and creativelyexplore the way new technologies measure cognitive decline.