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

“以不同的方式进行诊断”：对心理健康活力和技术的探索

基本信息

批准号：
ES/V011200/1
负责人：
Natassia Ford Brenman
金额：
$ 16.43万
依托单位：
Goldsmiths University of London
依托单位国家：
英国
项目类别：
Fellowship
财政年份：
2020
资助国家：
英国
起止时间：
2020 至无数据
项目状态：
已结题

来源：
https://gtr.ukri.org/projects?ref=ES%2FV011200%2F1
关键词：
Doing diagnosis differently exploration vitality

项目摘要

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.

检测神经退行性疾病的新方法如何绘制“实时人”图？人们是如何参与那些比以往更早、更深入地追踪认知衰退的科技项目的（Leibing 2014; Boenink, Van Lente, and Moors 2016; Swallow 2019）？这些新的测量和诊断实践带来了什么样的伦理和认知挑战？在这项研究中，我将利用我博士和博士后的经验、方法和概念见解来制定一个研究计划，以解决这些紧迫的问题。在我的博士学位上，我认为反对主流的需求分类创造了可能性，但付出了代价。为了使服务不足的群体有资格获得临床护理，志愿护理提供者以替代的、非诊断的方式阐明了心理健康需求。这需要在资助者、内部价值观和利益以及更广泛的关注事项之间进行艰苦的谈判。它还在“对”精神疾病的“了解”和服务使用者不确定的“生活经验”之间产生了新的紧张关系。在我的博士后阶段，我开始看到类似的紧张关系在神经退行性疾病的背景下是如何表现出来的。在预防和治疗试验要求早期发现阿尔茨海默病的情况下，有必要调查在临床诊断之前使用创新技术检测疾病迹象的影响（Milne等人，2018）以及对纳入试验的影响（Epstein 2008）。招募和测量实践是如何塑造、被塑造、或与研究参与者的生活和主观性相冲突的？他们为谁的利益服务？这个奖学金将使我能够“跟随”这些实证调查到一个新的实地站点，并将它们发展成一个更大的工作计划，与英国关于老龄化社会和人工智能和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经验联系之外，它们之间还存在理论和方法上的联系。在这两篇文章中，我都采用了“活力论”框架——目前在医学人类学/社会学中受到广泛关注——将精神（疾病）健康、环境、生物和社会之间的动态关系理论化（Canguilhem 1952/2001; Wahlberg 2018;Lupton 2019）。为了使这一理论在经验上发挥作用，我开发了一种方法方法，采用视觉和其他“现场”方法（灵感来自Goldsmiths学者（Wakeford & Lury 2012））。在活力论思维专家Monica Greco的指导下，我将发表并建立我的博士学位，以产生“活”的方式来参与“超认知”社会的心理健康系统中的空间和时间性（2000年后）。这将建立一个方法论和理论工具箱，以探索阿尔茨海默病领域的诊断、技术和活力主题。当涉及到检测神经退行性疾病时，一个主要的产出将是关注寿命与疾病轨迹生物学之间关系的拨款提案。产出结合了我博士和博士后工作的学术出版物，用户和公众参与，以及资助发展的范围。范围界定工作将在英国MRC痴呆症平台的“深度和频繁表型”（DFP）项目中进行：这是一个专注于评估和检测（但不是临床诊断）精神疾病的研究项目的完美例子。在DFP主要研究者和我的第三位导师（这项研究的道德顾问）的支持下，我将立即准备好与科学家、研究人员、参与者和更广泛的参与这项研究的社区接触。影响和参与活动将与范围界定工作和学术产出密切相关。我将举办公众和用户参与研讨会，以确定优先事项，并创造性地探索新技术衡量认知衰退的方式。