Informing the Design of Personal Informatics Technologies for Unpredictable Chronic Conditions

Personal informatics technologies, such as consumer fitness tracking devices, have an enormous potential to transform the self-management of chronic conditions. However, it is unclear how people living with relapsing and progressive illnesses experience personal informatics tools in everyday life: what values and challenges are associated with their use? This research informs the design of future health tracking technologies through an ethnographic design study of the use and experience of personal informatics tools in multiple sclerosis (MS) self-management. Initial findings suggest that future health tracking technologies should acknowledge people’s emotional wellbeing and foster flexible and mindful self-tracking, rather than focusing only on tracking primary

Self-Tracking by People Living with Multiple Sclerosis: Supporting Experiences of Agency in a Chronic Neurological Condition

Multiple sclerosis is a complex neurological condition. It disrupts the central nervous system leading to an individual range of physical, cognitive, and mental impairments. Research has focused on the tracking of primary disease indicators and disability outcome measures to assess the progression of this condition. However, there is little knowledge on how technologies could support the needs of people with multiple sclerosis (MS) in self-tracking their health and wellbeing. Drawing on qualitative research and design methods this thesis provides two contributions. Firstly, it improves understanding of self-tracking in MS self-management. Interview participants reported regaining a sense of control over MS through intertwining individual self-care practices with different self-tracking tools, including paper notebooks and fitness wearables. They associated experiences of control with their agency to document their health in holistic ways, involving symptom monitoring and life journaling. However, participants criticised that self-tracking apps can impede their capacities, in particular when the user experience is focused on predefined health indicators and the optimisation of health behaviour. These findings highlight the need to support people’s individual self-care intentions and agentive capacities through customisable self- tracking approaches. Secondly, this thesis contributes the design of Trackly, a technology probe that supports people in defining and colouring pictorial trackers, such as body shapes. We identify benefits and challenges of customisable and pictorial self-tracking through a field study of Trackly in MS self-management. Having been able to support their individual self-care intentions with Trackly, participants reported a spectrum of interrelated experiences of agency, including ownership, identity, awareness, mindfulness, and control. Overall, this thesis provides a qualitative account and design perspective that demonstrate how adapting self-tracking technologies to individual care needs supported experiences of agency. These findings are particularly relevant to the design of technologies aimed at leveraging personally meaningful self-care and quality of life

Self-tracking in Parkinson’s: The lived efforts of self-management

People living with Parkinson's disease engage in self-tracking as part of their health self-management. Whilst health technologies designed for this group have primarily focused on improving the clinical assessments of the disease, less attention has been given to how people with Parkinson's use technology to track and manage their disease in their everyday experience. We report on a qualitative study in which we systematically analysed posts from an online health community (OHC) comprising people with Parkinson's (PwP). Our findings show that PwP track a diversity of information and use a wide range of digital and non-digital tools, informed by temporal and structured practices. Using an existing framework of sensemaking for chronic disease self-management, we also identify new ways in which PwP engage in sensemaking, alongside a set of new challenges that are particular to the character of this chronic disease. We relate our findings to technologies for self-tracking offering design implications

Turning to Peers: Integrating Understanding of the Self, the Condition, and Others’ Experiences in Making Sense of Complex Chronic Conditions

People are increasingly involved in the self-management of their own health, including chronic conditions. With technology advances, the choice of self-management practices, tools, and technologies has never been greater. The studies reported here investigated the information seeking practices of two different chronic health populations in their quest to manage their health conditions. Migraine and diabetes patients and clinicians in the UK and the US were interviewed about their information needs and practices, and representative online communities were explored to inform a qualitative study. We found that people with either chronic condition require personally relevant information and use a broad and varied set of practices and tools to make sense of their specific symptoms, triggers, and treatments. Participants sought out different types of information from varied sources about themselves, their medical condition, and their peers’ experiences of the same chronic condition. People with diabetes and migraine expended great effort to validate their personal experiences of their condition and determine whether these experiences were ‘normal’. Based on these findings, we discuss the need for future personal health technologies that support people in engaging in meaningful and personalised data collection, information seeking, and information sharing with peers in flexible ways that enable them to better understand their own condition

Continence technologies whitepaper: Informing new engineering science research

Advances in healthcare technology for continence have historically been limited compared to other areas of medicine, reflecting the complexities of the condition and social stigma which act as a barrier to participation. This whitepaper has been developed to inspire and direct the engineering science community towards research opportunities that exist for continence technologies that address unmet needs in diagnosis, treatment and long-term management. Our aim is to pinpoint key challenges and highlight related research opportunities for novel technological advances. To do so, we draw on experience and expertise from academics, clinicians, patients and patient groups linked to continence healthcare. This is presented in four areas of consideration: the clinical pathway, patient perspective, research challenges and effective innovation. In each we introduce seminal research, background information and demonstrative case-studies, before discussing their relevance to engineering science researchers who are interested in approaching this overlooked but vital area of healthcare

The devil's in the detail: Final report of the independent evaluation of the Summary Care Record and HealthSpace programmes

professionals, NHS staff, service users, citizens, academics and evaluation scholars. It should be read in conjunction with our Year 1 reports on the SCR programme (May 2008) 1 and data quality (May 2008). 2 2. The SCR is an electronic summary of key health data, currently drawn from a patient’s GP-held electronic record and accessible over a secure Internet connection by authorised healthcare staff. It is one of a suite of innovations being introduced as part of the National Programme for IT in the English National Health Service (NHS) and delivered via a central ‘Spine’. Policy documents published in 2005-8 anticipated a number of benefits of the SCR, including: 3-6 a. Better care (i.e. the SCR would improve clinical decision-making); b. Safer care (i.e. the SCR would reduce risk of harm, especially medication errors); c. More efficient care (e.g. the SCR would make consultations quicker); d. More equitable care (i.e. the SCR would be particularly useful in patients unable to communicate or advocate for themselves); e. Reduction in onward referral (e.g. the SCR would avoid unnecessary ambulanc

Exploring Rheumatoid Arthritis Patients' Needs in Shared Decision Making: A Qualitative User Needs Study

Background: Rheumatoid arthritis (RA) is a chronic inflammatory debilitating joint condition with individualized symptom severity. Access to multiple medication choices allow consideration of patient preferences and fit to their lifestyles. Shared decision making (SDM) is a recent approach in medicine where medical decisions are formed in combination of latest scientific evidence, patient’s lived experiences, and physician’s clinical expertise. SDM may be a fitting approach for RA due to the extended time allowed for developing patient-physician rapport, room to discuss patient preferences, and decisions to be revisited. Objective: To explore user needs and challenges to support RA patients in shared decision-making processes as it relates to chronic disease management, self-monitoring, and medication choices. Methods: Semi-structured interviews were conducted with RA patients (n=13) recruited from the Canadian Arthritis Patient Alliance. Thematic analysis was performed using NVivo software. Data was coded inductively and iterated on until no new themes emerged. Results: Three main themes emerged from interview data. (1) Gaps in Psychosocial Care: Relevant to short and long-term medication side effects, sexual health, mental health, and family planning were sensitive and stigmatized topics which were often dismissed at the rheumatologist’s visits. (2) Patient Agency: RA patients were exercising patient agency needed for SDM through proactively seeking knowledge about their disease; making personal judgements on medications based on their symptoms; and relying on their social support networks for tough decisions. (3) Adaptations: Over years of dealing with RA, patients reported adaptations, such as flexibility to psychological adaptations, improved general health through modifiable lifestyle factors, and several minor ergonomic changes for improved daily comfort. Conclusion: Designs in health technology to support RA patients with SDM may benefit by acknowledging the dynamic nature of RA as a chronic disease. Further socio-technologic developments can minimize the burden of living with RA

Drivers for renewal and reform of contemporary nursing curricula: A blueprint for change

The creation of a curriculum blueprint appropriate to the development of a professional nurse who is practice-ready for the current and future context of health service delivery must take account of the extant context as well as an unpredictable and sometimes ambiguous future. The curriculum renewal process itself ought to challenge existing long held ideals, practices, and sacred cows within the health and higher education sectors. There is much to consider and importantly curriculum developers need to be mindful of reform within the health sector and health workforce education, as well as the concomitant vision and requirements of the nursing profession. Curriculum must develop more than discipline knowledge and skills: it must provide an infrastructure for generic abilities both social and intellectual in order to better prepare students for the registered nurse role. This paper discusses a number of forces that are essential to consider in curriculum development in undergraduate nursing education. © eContent Management Pty Ltd

Co-designing opportunities for human-centred machine learning in supporting type 1 diabetes decision-making

Type 1 Diabetes (T1D) self-management requires hundreds of daily decisions. Diabetes technologies that use machine learning have significant potential to simplify this process and provide better decision support, but often rely on cumbersome data logging and cognitively demanding reflection on collected data. We set out to use co-design to identify opportunities for machine learning to support diabetes self-management in everyday settings. However, over nine months of interviews and design workshops with 15 people with T1D, we had to re-assess our assumptions about user needs. Our participants reported confidence in their personal knowledge and rejected machine learning based decision support when coping with routine situations, but highlighted the need for technological support in the context of unfamiliar or unexpected situations (holidays, illness, etc.). However, these are the situations where prior data are often lacking and drawing data-driven conclusions is challenging. Reflecting this challenge, we provide suggestions on how machine learning and other artificial intelligence approaches, e.g., expert systems, could enable decision-making support in both routine and unexpected situations