Supporting patients undertaking heart failure self-management using multi-stakeholder co-design of a mobile health application

Heart failure is a prevalent, progressive chronic condition of considerable economic burden which places great strain on patients, family caregivers and health services. Self-management is supported by healthcare policy and is the mainstay for long-term heart failure care, however adherence to recommended guidelines is challenging with the existing literature reporting that patients are struggling to apply them to daily life. The aim of this research was to explore how patients might be supported in heart failure self-management with a mobile health app co-designed by patients, family caregivers and clinicians. Design Science Research Cycles, Design Thinking and co-design informed the research design. The Design Science Research Cycles framework focuses on a design that is relevant to the environment and consistent with the knowledge base. Design Thinking provided structure to the innovation process and co-design principles facilitated stakeholder interactions. A four-phased study was conducted using a multi-stakeholder team of seven patients, four family caregivers and seven clinicians. The process was facilitated by the lead clinician researcher embedded in the health service as a cardiac clinical nurse specialist. In Phase I stakeholder perspectives on heart failure self-management were explored prior to app design and development. Patient, family caregiver and clinician experiences and opinions were collected, analysed and visually represented as research outputs. Phase II involved the conceptual design and iterative development of the app. Patient personas were created from research outputs from Phase I, and these were used in two multi-stakeholder design workshops and two app wireframe feedback cycles. Next, in Phase III, the Care4myHeart app was tested in a 14-day usability study with a new subset of patients in the home setting to understand the patient user experience. Phase IV involved a process evaluation whereby experiences of those involved in the co-design process were explored. This thesis is structured around and includes nine publications: seven articles have been peer-reviewed and published; one is in press; and one article is currently under review. Key findings are reported in relation to each of the stakeholder groups involved in the research. For patients, daily self-management habits were established without the use of technology, so they were unsure how the app would fit in their current routines. Clinicians were easily-recruited, motivated research participants involved in each development stage and highly regarded the final app design. The lead clinician researcher led a highly structured Design Thinking process which allowed efficient development of the app. Executing the nurse-led innovation project required strong leadership and commitment in a negotiation of competing priorities as a clinician, researcher and app developer. Additionally, discovering the art and science of design was found to be powerful for this research. In regard to stakeholder interactions, co-design methods helped negotiate tensions between stakeholders as the design unfolded, especially because clinicians were more involved than patients. Co-design methods also provided a format to account for power differences between the healthcare consumer and healthcare provider. Overall, stakeholder interactions were effectively managed. Local mobile health app design can be achieved through partnering with patients, family caregivers and clinicians. This thesis contributes to the emerging body of knowledge on clinician-led context-specific apps, co-design processes and collaborative engagement with healthcare teams. There is appetite to engage more service users into healthcare improvement projects so further research is urgently needed to empower clinical teams to operationalise co-design in practice.