From chaos to clarity : designing eHealth to support self-management in stroke care

Sammanfattning: Introduction: Currently healthcare is shifting from a paternalistic model to a more patient-centered model in which patients’ involvement and self-management play a crucial role. Information and communication technology has the potential to shift the balance of power and responsibility from healthcare professionals to patients and citizens. To provide patients with health information systems and eHealth services which meet their needs and support them throughout their care and rehabilitation processes, there is a need of involving them not only in their care processes but also in the design and evaluation of eHealth. Aim: The overall aim of this research was to explore how a health information system or eHealth service (in this context an electronic care and rehabilitation planning tool) used by post-discharge stroke patients can be designed to improve patient self-management and collaboration between patients, their next-of-kin and different care professionals. Methods: A design research strategy was employed in this thesis project where an online care and rehabilitation planning was designed and evaluated to contribute to the knowledge base on patient involvement in both design of eHealth and in their care through use of eHealth. In study I, the current care and rehabilitation processes of post-discharge stroke patients in Stockholm County Council were explored using a qualitative case study. Data were collected through interviews and observations. Study II explored the stroke patients’ information needs and potential eHealth services were suggested by the researchers and discussed with the patients. An interactive prototype ‘My care plan’ was designed and improved based on the participants’ input. Data for this study were collected through focus groups and usability tests. Study III was mainly a document study where the authors explored the Swedish current infrastructure for health information exchange. In study IV, the prototype was evaluated from both care professionals’ and aphasia patients’ perspective. Results: Based on the patients’ risk factors and disabilities, post-discharge stroke patients’ involvement throughout the care and rehabilitation processes varied significantly. The analysis of patients’ information needs resulted in design of an interactive care and rehabilitation planning tool ‘My care plan’ which consisted mainly of a rehabilitation plan and necessary health and administrative information. The results from the evaluation of the care and rehabilitation planning tool showed that despite some challenges and limitations with using the tool, both care professionals and stroke patients were positive towards using it. The Swedish national health information exchange platform provides opportunities for information exchange, however needs to be further evaluated from a patient perspective to determine how it can support and impact on patient empowerment and collaboration in care. Conclusions: The main contribution of this thesis is involvement of chronically ill patients suffering from several cognitive and physical disabilities in the design and evaluation of eHealth services. Despite several challenges throughout this research project, a deep understanding about this patient group’s needs throughout their care and rehabilitation processes was gained. The thesis also provides an early exploration of the Swedish national health information exchange platform. As this is an area rapidly evolving and of high priority in Sweden today, the results presented in this thesis will provide important input to future research, development and policy in this field.