Carolina Wannheden

In previous research we have learned that patients with chronic or complex diseases often experience difficulties when transitioning from hospital care to self-care in their home. We address these difficulties by developing an eHealth tool for patients - ePATH (electronic Patient Activation in Treatment at Home) - intended to empower each patient to manage their individual situation. We have employed a user-centered design process involving both patients and healthcare personnel to specify the content and functionality of ePATH. The system is deployed as a web application with secure login for patients. In this article, we describe the main content and functionality of the system that makes it possible for a patient to manage symptoms development in relation to treatment progression Interactive functionality, e.g., reminders and social support, is included to make the ePATH a useful and informative bridge between patients, next-of-kin and different caregivers. One lesson learned is ...

The increasing prevalence of chronic conditions and multimorbidity poses great challenges to healthcare systems. As patients’ engagement in self-managing their chronic conditions becomes increasingly important, eHealth interventions are a promising resource for the provision of adequate and timely support. However, there is inconclusive evidence about how to design eHealth services to meet the complex needs of patients. This study applied an evidence-based and theory-informed user-centered design approach in three phases to identify the needs of older adults and healthcare professionals in the collaborative management of multimorbidity (phase 1), develop an eHealth service to address these needs (phase 2), and test the feasibility and acceptance of the eHealth service in a clinical setting (phase 3). Twenty-two user needs were identified and a web-based application—ePATH (electronic Patient Activation in Treatment at Home)—with separate user interfaces for patients and healthcare pr...

Background Chronic care involves multiple activities that can be performed by individuals and healthcare staff as well as by other actors and artifacts, such as eHealth services. Thus, chronic care management can be viewed as a system where the individual interacts with people and eHealth services performing activities to maintain or improve health and functioning, called co-care . Yet, the system perspective is not reflected in concepts such as person-centered care and shared decision making. This limits the understanding of individuals’ global experience of chronic care management and subsequently the ability to optimize chronic care. The aim of this study was threefold: (1) to propose a theory-based operationalization of co-care for chronic care management, (2) to develop a scale to measure co-care as a distributed system of activities, and (3) to evaluate the scale’s psychometric properties. With the theory of distributed cognition as a theoretical underpinning, co-care was oper...

Background Technological advances have radically changed the opportunities for individuals with chronic conditions to practice self-care and to coproduce health care and research. Digital technologies enable patients to perform tasks traditionally carried out by health care professionals in a more convenient way, at lower costs, and without compromising quality. Patients may also share real-world data with other stakeholders to promote individual and population health. However, there is a need for legal frameworks that enable patient privacy and control in such sharing of real-world data. We believe that this need could be met by the conceptualization of patient-controlled real-world data as knowledge commons, which is a resource shared by a group of people. Objective This study aimed to propose a conceptual model that describes how patient-controlled real-world data can be shared effectively in chronic care management, in a way that supports individual and population health, while ...

Introduction: Digital health technologies such as self-monitoring devices and apps are becoming increasingly important as tools to promote healthy habits and support individuals in their self-care. There is still a scarcity of research that builds on motivational theory to better understand the functioning of digital health technologies. The self-determination theory (SDT) is a macro theory of motivation that delineates three basic psychological needs that are linked to different types of motivation and lead to well-being when satisfied and illbeing when frustrated.Objective: To explore how the use of a digital tool for self-monitoring and communication with healthcare satisfies or frustrates basic psychological needs across four spheres of user experience: interface, task, behavior, and life.Methods: The study was conducted in a Swedish primary care setting with individuals who participated in a pilot study of a digital health intervention for self-monitoring in chronic care manage...

Chronic care management is dependent on productive interactions between patients and healthcare professionals. Digital health technologies (eHealth) open up new possibilities for improving the quality of care, but there is a limited understanding of what productive interactions entail. This study explores characteristics of productive interactions to support self-care and healthcare in the context of eHealth use in diabetes care. We collected qualitative data based on interviews with nurses and responses to open-ended survey questions from patients, prior to and post using an eHealth service for self-monitoring and digital communication. We found that eHealth’s influence on productive interactions was characterized by unconstrained access, health parameter surveillance, and data-driven feedback, with implications for self-care and healthcare. Our findings indicate that eHealth perforates the boundaries that define interactions under traditional, non-digital care. This was manifested...

Background Person-centered care (PCC) emphasize the importance of supporting individuals’ involvement in care provided and self-care. PCC has become more important in chronic care as the number of people living with chronic conditions is increasing due to the demographic changes. Digital tools have potential to support interaction between patients and healthcare providers, but empirical examples of how to achieve PCC in chronic care and the role of digital tools in this process is limited. The aim of this study was to investigate strategies to achieve PCC used by the healthcare professionals at an outpatient Rheumatology clinic (RC), the strategies’ relation to digital tools, and the perceived impact of the strategies on healthcare professionals and patients. Methods A single case study design was used. The qualitative data consisted of 14 semi-structured interviews and staff meeting minutes, covering the time period 2017–2019. The data were analyzed using conventional content analy...

BackgroundWorldwide, the number of people with Parkinson’s disease (PD) is predicted to double between the years 2005 and 2030. Chronic care management requires active collaboration and knowledge exchange between patients and health care professionals (HCPs) for best possible health outcomes, which we describe as co-care. eHealth services have the potential to support the realization of co-care between people with PD (PwP) and HCPs.ObjectiveThis study aimed to explore how co-care could be operationalized in PD care, supported by eHealth. More specifically, this study explores PwP's and HCPs' expectations and desired eHealth functionalities to achieve co-care.MethodsPrinciples of participatory design were used to enable the identification of co-care needs and design ideas, in a series of 4 half-day co-design workshops. The sample included 7 (4 women) PwP and 9 (4 women) HCPs, including 4 neurologists, 3 nurses, and 2 physiotherapists. The co-design process resulted in a funct...

BACKGROUND The need for services to support patient self-care and patient education has been emphasized for patients with chronic conditions. People with chronic conditions may spend many hours per year in health and social care services, but the majority of time is spent in self-care. This has implications in how health care is best organized. The term co-care specifically stresses the combination of health care professionals’ and patients’ resources, supported by appropriate (digital) tools for information exchange, to achieve the best possible health outcomes for patients. Developers of electronic health (eHealth) services need to consider both parties’ specific needs for the service to be successful. Research on participants’ experiences of participating in co-design sessions is scarce. OBJECTIVE The aim of this study was to describe different stakeholders’ (people with chronic conditions, health care professionals, and facilitators) overall experiences of participating in co-de...

Background: Knowledge and understanding remains poor regarding what optimally integrated mental-health and social care services entail from the service users’ perspective, but this knowledge is important in the development of services. Aim: To identify key components of integrated mental-health and social care services that contribute to value for service users in Sweden. Method: An explorative research study design was used, based on data from four group interviews with service-user representatives. Results: The analysis resulted in eight subcategories reflecting components that were reported to contribute to value for service users. These subcategories were grouped into three main categories: 1) professionals who see and support the whole person, 2) organizational commitment to holistic care and 3) support for equal opportunities and active participation in society. Conclusion: The complexity of integrated mental-health and social care services requires coordination across the individual and organizational levels as well as ongoing dialogue and partnerships between service users, service-user associations, and health and social care organizations. In this integration, it is important that service users and service-user associations not only are invited but actively participate in the design of care and support efforts.

SummaryBackground: The care of HIV-related tuberculosis (HIV/TB) is complex and challenging. Clinical decision support (CDS) systems can contribute to improve quality of care, but more knowledge is needed on factors determining user acceptance of CDS.Objectives: To analyze physicians’ and nurses’ acceptance of a CDS prototype for evidence-based drug therapy recommendations for HIV/TB treatment.Methods: Physicians and nurses were involved in designing a CDS prototype intended for future integration with the Swedish national HIV quality registry. Focus group evaluation was performed with ten nurses and four physicians, respectively. The Unified Theory of Acceptance and Use of Technology (UTAUT) was used to analyze acceptance.Results: We identified several potential benefits with the CDS prototype as well as some concerns that could be addressed by redesign. There was also concern about dependence on physician attitudes, as well as technical, organizational, and legal issues.Conclusion...

Infectious Diseases Department, Karolinska University Hospital, Stockholm, Sweden. To understand the challenges faced by nurses and physicians in the treatment of patients co-infected with the human immunodeficiency virus (HIV) and tuberculosis (TB), with special focus on opportunities for information and communication technology. Using a qualitative study design, on-site observations and informal discussions were carried out to become acquainted with the clinical context. Seven nurses and six physicians were purposefully selected to participate in one-to-one in-depth interviews inspired by cognitive task analysis. Interviews were audio recorded and transcribed verbatim, and analysed using inductive thematic analysis. Care providers faced challenges related to 1) the complexities inherent to TB-HIV co-treatment, 2) clinical knowledge and task standardisation, 3) care coordination and collaboration, 4) information management, and 5) engaging patients in their treatment. Support is needed on several levels to address the emerging burden of TB-HIV coinfection in Sweden. Educational material and tools need to be further developed to support care providers in making decisions about adequate care, and to support collaborative activities and communication among patients and care providers. Information and communication technology based solutions may provide an opportunity to address some of these challenges.