Living with Technology : Digital Mental Health & Patient Flourishing

Abstract

Healthcare systems everywhere are under pressure, and one of the ways to counteract long waiting lists and low resources is through digitalisation and data. Mental healthcare, in particular, has been fighting an uphill battle, bearing more than 30% of the overall disease burden while getting less than 10% of the total healthcare budget. One possibility to battle that skewness is to move towards care where patients are empowered to take greater responsibility for their own wellbeing. A way to do that is by relying on data collected by the patients and brought into healthcare. The term ‘wearable devices’ functions as an umbrella term for devices that collect physiological data and are used to track information that people can use for their own health monitoring. While there are different types of wearables, including smartwatches, smart jewellery, smart glasses, and smart shoes, smartwatches have gained the most traction by being easily available. Smartwatches are an attractive option to support patients needing to monitor their health metrics, with no exception for patients with serious mental illness. In mental health, monitoring objective data like sleep and movement can be useful, and adding subjective information like feelings can be determining. Subjective data can be derived from mobile applications (app), where patients can log their lived experiences. Changing healthcare systems to incorporate a more patient empowerment-friendly approach introduces new digital health technologies that the often-overworked healthcare professionals will then need to monitor. Therefore, adopting a co-design approach is essential in healthcare platform design, as it enhances the likelihood of the platform being successfully integrated and effectively used by both patients and healthcare professionals. Human flourishing—the development of individuals reaching their highest potential—is an integrated lens throughout this thesis, to truly try to understand the humans involved in this research. This thesis focuses on how digital mental health platforms can foster human flourishing by integrating the continuous collection of data into the daily lives of patients with bipolar disorder and schizophrenia. This research focuses on the ways in which patients engage with wearables and apps to support their mental health trajectory and enhance their overall wellbeing. The research is interdisciplinary in nature, but the main target of the contribution is the field of Information Systems (IS). I discuss patient empowerment and introduce a shift to patient flourishing, as well as detailing the somatic experiences and data work patients go through when they contribute to science. Furthermore, this research outlines a co-design process with patients and healthcare professionals seeking to understand how to effectively co-design platforms that can be used in practice. Finally, I explore data trends from wearables on a group-level basis and an individual level basis. This research entailed exploring the feasibility of smartwatches, mobile apps and platforms supporting psychiatric care is studied with 21 patients and 13 healthcare professionals. It included using a co-design approach to design and develop an app and a digital health platform to support patients with serious mental illness with their treatment. The digital platform and app go by the name DataWell, the name reflecting on ‘Data for Wellbeing’. The patients in the study are all receiving care in Landspitali, hearing to two different diagnoses and thereby two units, the bipolar team and schizophrenia unit. Patients carried a smartwatch for six weeks, continuously collecting data into DataWell. Additionally, they answer six daily wellbeing questions in a mobile app. To supplement that data, they also answer a questionnaire three times over the interval, and at the end of the period, they attend a semi-structured interview. The overall method employed in this research is canonical action research (CAR), which adheres to principles emphasizing both practical implications and research implications. This research presents several key findings related to the design, development and use of a digital mental health platform and app. First, a co-design process with healthcare professionals led to the identification of two design principles: (i) clarity and accessibility of information from the patient’s perspective, and (ii) efficiency and flexibility for healthcare professionals. Second, the majority of patients felt encouraged by monitoring their data continuously and expressed interest in continuing the data collection. Third, a two-dimensional framework to capture patients’ experiences involving data work and somatic experiences, with the horizontal axis reflecting the physical impact of data work and the vertical axis reflecting its emotional effects. Additionally, emphasis is put on that self-efficacy is an important factor in patient empowerment and that a focus on individual behavioural patterns is more effective than group-based approaches for patients with serious mental illnesses. Lastly, the DataWell platform, which incorporates perspectives for patients, healthcare professionals, and researchers, was developed as a digital tool to support mental health management. The accompanying app prompts users to answer daily wellbeing questions, calculates a subjective wellness score (MindPoints), and provides a weekly summary of their mental health status. This thesis makes a three-fold theoretical contribution. First, it blends in with the growing IS literature on data work in healthcare. When patients participate more in their own care, their engagement in invisible data work grows. Second, it discusses a connected concern, namely somatic experiences, by examining how wearables and apps affect patients’ bodily experiences. Further – it demonstrates how individual-based data analysis can bring meaningful insights into healthcare. Third, it advances the literature on human flourishing and connects it to co-design, as well as conceptualising ‘patient flourishing’ and ‘living with technology’. This research offers a three-fold practical contribution to digital mental health through the development of two innovative technologies, the DataWell app and platform, and a novel approach aimed at improving treatment and wellbeing for individuals with serious mental health conditions. The DataWell app prompts daily wellness questions, promoting reflection and selfawareness, helping patients track mental health fluctuations. The platform integrates data from a smartwatch and an app, providing patients with clear visualizations of their data and offering healthcare professionals an efficient way to get a quick and comprehensive overview of their patients’ status that day. The data-driven approach constitutes another practical contribution by combining subjective and objective data, as well as qualitative methods with data-driven approaches; this approach provides a comprehensive understanding of the nuanced experiences of patients with mentalhealth conditions. The data-driven approach emphasises individualization through personalised analysis, is mindful of data-work and actively fosters patient flourishing.