The role of data supported decision-making technology in respiratory care

Tendedez, Helena and Ferrario, Maria Angela and McNaney, Roisin and Whittle, Jon (2020) The role of data supported decision-making technology in respiratory care. PhD thesis, Lancaster University.

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Abstract

Millions of people across the world are affected by Chronic Obstructive Pulmonary Disease (COPD). It is one of the most prevalent chronic health conditions in the world. As a life-long condition that effects breathing, it has a huge physical and mental impact on peoples’ lives every single day. COPD is characterised by periods of respiratory exacerbations which, if are not managed swiftly, can result in hospitalisation for emergency care. However, effective self-management and support can help people with COPD to avoid the distress of requiring emergency care, while supporting their quality of life and independence. In addition to the difficulties that COPD introduces to a plethora of people, it also presents a huge challenge for healthcare services around the world. In the UK, COPD generates a high number of hospital admissions annually, with many of these for emergency care. In this highly demanding and time-pressured context, healthcare professionals are required to make timely and evidence-based decisions to effectively care for patients. This is the challenging reality for all healthcare professionals that collaborate in the ongoing management and support involved for COPD care. Data supported decision-making (DSDM) technology holds potential to support the ongoing care of people with COPD, through connecting them and their healthcare professionals with pertinent data that can inform decision-making around care. Examples of such technologies include patient health monitoring apps that share data with healthcare professionals for personalised care planning, and clinical dashboards that interlink data from different sources to support decision-making about patient treatment. However, there is currently limited research working in partnership with people with COPD and respiratory healthcare professionals to truly understand how these technologies might support care in its real-world context. Specifically, there are three key gaps in knowledge which this thesis addresses. First, there is a need to understand how DSDM technologies can be designed to support healthcare professionals to provide COPD care, while considering the challenges of implementing technology into healthcare systems. Furthering this, there is a need to understand how technology could support the self-management of COPD, considering it is progressive and highly debilitating in nature. Finally, there is a need to understand how technology could support the ongoing care collaboration between healthcare professionals and patients through sharing patient-generated data about COPD symptoms. Each of these three areas are important in developing an understanding about how technology could support the real-world context of COPD care. To advance our knowledge in this space, I conducted three novel pieces of research working with people with COPD and healthcare professionals to understand how DSDM technologies could support everyday challenges related to COPD care. First, I worked with 11 healthcare professionals to co-design a DSDM dashboard by exploring their decision-making needs around COPD care. Then I conducted exploratory research involving 171 people with chronic respiratory conditions to understand how technology may support their self-care. Finally, I conducted a small exploratory case study with eight participants to understand the patient experience of self-monitoring their respiratory symptoms and the healthcare professionals’ experience of receiving this data remotely. The thesis concludes with a synthesis of the key novel findings across the three research studies, providing overarching opportunities and nodes of caution when designing and deploying DSDM technologies in this space. This discussion draws attention to the ways that perceptions of data ‘trustworthiness’ affects how DSDM technologies are used for decision-making, the tensions that occur when technology does not align with the local context of care, the need for self-management technology to support the personal and evolving condition journey of COPD, and how we may consider designing patient facing technologies to better accommodate potential reactive self-care patterns