Title: 'Doing diagnosis differently': An exploration of vitality and technology in mental health
Funder: Economic and Social Research Council

Abstract: Summary: - Produce a set of articles aimed at peer-reviewed international journals, including a co-edited special issue, to consolidate the dissemination of my PhD and on-going research. - Organise 2 stakeholder workshops: one priority setting and one using creative methods, to scope and pilot prospective research on dementia. - Develop grant proposals, aligned with the Industrial Strategy, for 2 prestigious 3-year awards from the Wellcome Trust and from the ESRC. Academic dissemination & outputs: 1. "'Doing need differently: the labour of inclusion in voluntary sector psychotherapy services in the UK" Single-author ethnographic paper drawing on 3 PhD field sites. A study of practices of inclusion in voluntary sector mental health in the context of UK Improving Access to Psychological Therapies policy. Following a 'vitalist' framework, it aims to make visible tensions between 'lived' and 'known' mental health need. Target journal & conference: Medical Anthropology EASA 2021 2. "Making milieu: a 'vital' methodology for studying relations between place and need in mental health care" Single-author methodological paper based on PhD. This makes the case for a (new) vitalist methodology and presents data from a creative mapping method to understand dynamic relations between place and need in mental health care. Target journal & conference: Sociological Review BSA 2021 3. "Where is cognitive decline made to matter? Bringing pre-dementia Alzheimer's to 'life' in the clinical research facility." Single-author paper and co-edited special issue on 'Vital Spaces' in biomedicine and society (theme of our Chronic Living conference panel). Describes multiple knowledge practices bringing 'silent' or pre-Alzheimer's to 'life' in clinical research spaces. Target journal & conference: Biosocieties (co-edited special issue) Chronic Living 2020/1 (subject to COVID-19 rearrangements) 4. "Casting long shadows: phenotyping dementia and the making of the digital ageing subject" Co-authored paper (with mentor) enquiring into the making of the digital ageing subject through digital methods for the early detection of dementia. Target journal & conference: Social Studies of Science 4S 2020 (pre-PDF online due to COVID-19) The two publications based on my PhD are based on thesis chapters I have not yet published or presented at conferences. I will bring them to publication standard to communicate two major contributions of my thesis to an academic audience. The others relate to my post doc project and the field I propose to develop my future work in. The first is an important bridging paper between my PhD and post-doc, linking themes of vitality, space and place to technologies for the early detection of Alzheimer's. The last paper will be co-authored to disseminate my work on digital psychiatry and develop a publication record with STS scholars. User engagement and non-academic outputs: In addition to research outputs, this fellowship will enable me to develop impact-oriented activities. The user engagement component comprises two co-production workshops with stakeholders in an MRC Dementias Platform UK study of the development of Alzheimer's disease: one priority setting and one creative workshop. A poster will be produced to disseminate outcomes. The public engagement component is a collaborative project with social scientists at the Wellcome Genome Campus, via an interactive workshop on 'Data about you' for diverse age groups, to be developed further to launch a second event focussed on innovation in mental health. Grant development: The above activities will feed into an output of research proposals, aligned with the Industrial Strategy (see justification) for two prestigious awards: Wellcome Trust Post-Doctoral Research Fellowship and ESRC New Investigator Grant. An expert advisory committee will be built to ensure scientific rigour in grant applications.

Lay abstract: How do new methods of detecting neurodegenerative disease map the 'person-in-time'? How do people come to participate in techno-scientific projects that seek to track cognitive decline earlier and more intensively than ever before (Leibing 2014; Boenink, Van Lente, and Moors 2016; Swallow 2019)? What ethical and epistemic challenges do these new measurement and diagnostic practices bring? In this fellowship, I will draw on empirical, methodological, and conceptual insights from my PhD and postdoc to develop a research programme to tackle these pressing questions. In my PhD, I argued that working against mainstream classifications of need created possibilities but came at a cost. To produce eligibility and access to clinical care for underserved groups, voluntary care providers 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 produced new tensions between 'knowledge of' mental ill health and the indeterminate 'lived experience' of service users. In my post-doc, I am beginning to see how similar tensions might manifest in the context of neurodegenerative disease. Where prevention and treatment trials demand the early detection of Alzheimer's disease, there is a need to investigate the effects of using innovative technologies to detect signs of the disease before it is diagnosed clinically (Milne et al. 2018) and the implications for inclusion in trials (Epstein 2008). How do recruitment and measurement practices shape, become shaped by, or conflict with the lives and subjectivities of research participants? Whose interests do they serve? This fellowship will enable me to 'follow' such empirical inquiries to a new field site and develop them into a bigger 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 and methodological threads running between them. In both, I adopt a 'vitalist' framework - currently receiving much attention within medical anthropology/sociology - that theorises the dynamic relations between 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 approach employing 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 to generate '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 to explore themes of diagnosis, technology, and vitality in the field of Alzheimer's disease. A major output will be grant proposals that attend to the relations between lived time and the biology of disease trajectories when it comes to detecting neurodegenerative disease. The outputs combine academic publications from my PhD and post-doc work, user and public engagement, and scoping for grant development. Scoping work will be in the MRC Dementias Platform UK's "Deep and Frequent Phenotyping" (DFP) project: a perfect example of a research programme focussed on assessment and detection (but not clinical diagnosis) of a psychiatric condition. With the support of the DFP principle investigator, and my third mentor (an ethical advisor to the study) I will immediately be ready to engage scientists, researchers, participants and wider communities that have stakes in this research. Impact and engagement activities will be closely linked to the scoping work and academic outputs. I will run both public and user engagement workshops to set priorities and creatively explore the way new technologies measure cognitive decline.

Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE;8.4 RESEARCH DESIGN AND METHODOLOGIES (HEALTH SERVICES)
Health categories: MENTAL HEALTH;NEUROLOGICAL