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

检测神经退行性疾病的新方法是如何映射“时间人”的？人们如何参与那些寻求比以往更早、更深入地追踪认知衰退的技术科学项目(雷冰2014年；Boenink、Van Lente和Moors 2016年；Swallow 2019年)？这些新的测量和诊断实践带来了什么伦理和认知挑战？在这项研究中，我将利用我的博士和博士后的经验、方法论和概念性见解来开发一个研究计划来解决这些紧迫的问题。在我的博士学位中，我认为与主流的需求分类背道而驰创造了可能性，但也是有代价的。为了使未得到充分服务的群体有资格获得临床护理，志愿护理提供者以替代的、非诊断性的方式阐明心理健康需求。这需要在资助者、内部价值观和利益以及更广泛的关切问题上进行艰苦的谈判。它还在“心理疾病知识”和服务用户不确定的“生活经验”之间产生了新的紧张关系。在我的博士后生涯中，我开始看到类似的紧张关系可能会在神经退行性疾病的背景下表现出来。在预防和治疗试验要求及早发现阿尔茨海默病的地方，需要调查在临床诊断之前使用创新技术检测疾病迹象的效果(Milne等人。以及对纳入试验的影响(爱泼斯坦，2008年)。招募和测量实践如何塑造、被塑造或与研究参与者的生活和主体性相冲突？它们为谁的利益服务？这一奖学金将使我能够将这样的经验性调查“跟踪”到一个新的现场，并将它们发展成更大的工作计划，与英国关于我们老龄化社会和人工智能与数据的工业战略保持一致。除了我的博士学位和新兴研究之间的这种经验联系，它们之间存在理论和方法论上的联系。在这两本书中，我都采用了目前在医学人类学/社会学中备受关注的“生命论”框架，该框架对心理(疾病)健康、环境、生物学和社会之间的动态关系进行了理论推导(坎吉利姆1952/2001；沃尔伯格2018；勒普顿2019)。为了将这一理论付诸实践，我开发了一种方法论方法，使用视觉和其他“生活”方法(灵感来自Goldsmith学者(Wakeford&Lury 2012))。在生命主义思维专家莫妮卡·格雷科的指导下，我将出版并建立我的博士学位，以产生在一个“超认知”社会的心理健康系统中接触空间和时间的“生活”方法(Post 2000)。这将建立一个方法论和理论工具箱，探索阿尔茨海默病领域的诊断、技术和活力等主题。一个主要的成果将是在检测神经退行性疾病时关注生存时间和疾病生物学之间的关系的拨款建议。这些成果结合了我的博士和博士后工作的学术出版物，用户和公众的参与，以及拨款开发的范围。范围的工作将在MRC Dementias PlatformUK的“深度和频繁表型”(DFP)项目中进行：这是一个专注于精神疾病的评估和检测(但不是临床诊断)的研究计划的完美例子。在DFP首席研究员和我的第三位导师(研究的伦理顾问)的支持下，我将立即准备好让科学家、研究人员、参与者和更广泛的社区参与到这项研究中来。影响和参与活动将与范围界定工作和学术成果密切相关。我将举办公共研讨会和用户参与研讨会，确定优先事项，创造性地探索新技术衡量认知能力下降的方式。

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.