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

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

Healthcare Professionals’ Experience of Performing Digital Care Visits—A Scoping Review

The use of digital care visits has been increasing during the COVID-19 pandemic. Learning more about healthcare professionals’ technology experiences provides valuable insight and a basis for improving digital visits. This study aimed to explore the existing literature on healthcare professionals’ experience performing digital care visits. A scoping review was performed following Arksey & O’Malley’s proposed framework using the Preferred Reporting Items for Systematic reviews and Meta-Analyses. The collected data were analyzed using thematic content analysis. Five main themes were identified in the literature: positive experiences/benefits, facilitators, negative experiences/challenges, barriers, and suggestions for improvement. Healthcare professionals mostly reported having an overall positive experience with digital visits and discovered benefits for themselves and the patients. However, opinions were mixed or negative regarding the complexity of decision making, workload and workflow, suitability of this type of care, and other challenges. The suggestions for improvement included training and education, improvements within the system and tools, along with support for professionals. Despite overall positive experiences and benefits for both professionals and patients, clinicians reported challenges such as physical barriers, technical issues, suitability concerns, and others. Digital care visits could not fully replace face-to-face visits

Nurses' experience of using video consultation in a digital care setting and its impact on their workflow and communication.

Sweden as many other countries uses video consultation to increase patients' access to primary healthcare services particularly during the COVID-19 pandemic. Working in digital care settings and using new technologies, in this case video consultations, require learning new skills and adoption to new workflow. The aim of this study is to explore nurses' experience of using video consultation in a digital care setting and its impact on their workflow and communication. Fifteen semi-structured interviews were carried out with registered nurses recruited from a private digital healthcare provider. Interviews were recorded, transcribed, and analysed using an abductive approach. Nurses' workflow was modeled, and several categories and subcategories were identified: nurses' workflow (efficiency, flexibility, and information accessibility); communication (interaction with patients and interprofessional communication); user experience (change and development of the platform, challenges, and combining digital and physical care). Even though providing online care has its limitations, the nurses were positive towards using video consultations

The Future of Online Video Consultations in Primary Care : A Qualitative Study

The COVID-19 pandemic has significantly increased the use of remote services such as video consultations (VCs). In Sweden, private healthcare providers offering VCs have grown substantially since 2016 and have been controversial. Few studies have focused on physicians' experiences of providing care in this context. Our overall aim was to study physicians' experiences of VCs, here focusing on their suggestions for future improvements. Twenty-two semi-structured interviews were performed with physicians working for an online healthcare provider in Sweden, and analyzed through inductive content analysis. Two themes emerged related to desired future improvements of VCs; blended care and technical innovation

Accessing and sharing health information for post-discharge stroke care through a national health information exchange platform : a case study

BACKGROUND: Patients and citizens need access to their health information to get a retrospective as well as a prospective view on their care and rehabilitation processes. However, patients' health information is stored in several health information systems and interoperability problems often hamper accessibility. In Sweden a national health information exchange (HIE) platform has been developed that enables information exchange between different health information systems. The aim of this study is to explore the opportunities and limitations of accessing and interacting with important health information through the Swedish national HIE platform. METHODS: A single case study approach was used for this study as an in-depth understanding of the subject was needed. A fictive patient case with a pseudo-name was created based on an interview with a stroke coordinator in Stockholm County. Information access through the national health information exchange platform and available service contracts and application programming interfaces were studied using different scenarios. RESULTS: Based on the scenarios created in this study, patients would be able to access some health related information from their electronic health records using the national health information exchange platform. However, there is necessary information which is not retrievable as it is either stored in electronic health records and eHealth services which are not connected to the national health information exchange platform or there is no service contract developed for these types of information. In addition, patients are not able to share information with healthcare professionals. CONCLUSION: The national Swedish HIE platform provides the building blocks needed to allow patients online access to their health information in a fragmented and distributed health system. However, more complex interaction scenarios allowing patients to communicate with their health care providers or to update their health related information are not yet supported. Therefore it is of great importance to involve patients throughout the design and evaluation of eHealth services on both national and local levels to ensure that their needs for interoperability and information exchange are met

Collaborative interaction points in post-discharge stroke care

Introduction: Lack of appropriate electronic tools for supporting patient involvement and collaboration with care professionals is a problem in health care.Methods: Care and rehabilitation processes of post-discharge stroke patients were analysed using the concept of interaction points where patients, next-of-kin and care professionals interact and exchange information. Thirteen interviews with care professionals and five non-participatory observations were performed. Data were analysed using content analysis and modelling of interaction points in the patient journey.Results: Patient participation and interaction patterns vary; patients requiring home care have a passive role and next-of-kin or nurses become advocates by coordinating care on behalf of the patient, whereas patients who are able to visit primary care coordinate their own care by initiating interactions. Important categories of participation include the following: participation in care planning, in monitoring risk factors and in rehabilitation planning.Conclusions: Designing a supportive electronic tool requires understanding the interactions and patients’ activity levels at each interaction point. A tool for patients with higher activity level should support them to coordinate their own care, whereas for a less-active patient group, the tool could focus on supporting next-of-kin and care professionals in motivating, guiding and including passive patients in their care and rehabilitation processes

Evaluation of an Electronic Care and Rehabilitation Planning Tool With Stroke Survivors With Aphasia: Usability Study

BackgroundPatients with chronic illnesses with physical and cognitive disabilities, particularly stroke survivors with aphasia, are often not involved in design and evaluation processes. As a consequence, existing eHealth services often do not meet the needs of this group of patients, which has resulted in a digital divide. ObjectiveThe aim of this study was to examine the effectiveness and user satisfaction of an electronic care and rehabilitation planning tool from the perspective of stroke survivors with aphasia. This would help us gain knowledge on how such a tool would need to be adapted for these patients for further development. MethodsUsability tests were conducted with 9 postdischarge stroke survivors with aphasia. Effectiveness was measured using task-based tests, and user satisfaction was studied through qualitative interviews at the end of each test. All tests were audio recorded, and each test lasted approximately 1 hour. The data were analyzed using qualitative content analysis. As the tool can be used by stroke survivors either independently or with some support from their next of kin or care professionals, the research group decided to divide the participants into 2 groups. Group 1 did not receive any support during the tests, and group 2 received some minor support from the moderator. ResultsThe results showed that the care and rehabilitation planning tool was not effective for stroke survivors with aphasia, as many participants in group 1 did not accomplish the tasks successfully. Despite several usability problems and challenges in using the tool because of patients’ disabilities, the participants were positive toward using the tool and found it useful for their care and rehabilitation journey. ConclusionsThere is a need to involve patients with chronic illnesses more in the design and evaluation processes of health information systems and eHealth services. eHealth services and health information systems designed for this group of patients should be more adaptable and flexible to provide them with appropriate functionalities and features, meet their needs, and be useful and easy to use. In addition, the design and evaluation processes should be adapted, considering the challenges of this patient group