Trends in Patient Generated Data – An Initial Review

In recent years, patient-centered care has gained significant momentum in healthcare and the patient is more involved as an active participant in data generation. In this state of the art review we identify trends in patient generated data (PGD) and areas in need of further research by reviewing papers published in the health tracks of five high-ranked IS conferences. Our results suggest that research is mostly empirically grounded and primarily focuses on sickness rather than wellness issues. There is an emphasis on chronic diseases and self-management, dealing with user motivation, and a focus mostly on mobile apps. Though technology plays an important part, there is scarce problematization of and theorization on PGD. Further studies are needed that investigate the effects of PGD on patients and healthcare providers, include a wider range of issues and incorporate wearable devices more comprehensively

Enactive methods towards situational learning - engaging people with intellectual and developmental disability in design

In this paper we explore how enactive methods may support and enhance the design of mobile solutions for people with intellectual and developmental disabilities. Our project deals with supporting independent public transport and applies enactive methods in order to account for the interdependent nature of technology, disability, and environment. We staged three iterations of a bus workshop and one theatre workshop where real, everyday scenarios were acted out to gain tacit yet crucial insights. These enactive workshops and the prototype testing showed that transport activities are context dependent and unique to each individual. In our case, enactive methods revealed that independent public transport goes beyond a need for reminders, time management and communication, towards the management of unforeseen events. Our work shows how a closer realistic setting may provide more nuanced, personal, and detailed design insights that support emotional and situational understandings of user experiences.publishedVersionPaid open acces

Photovoice—Towards Engaging and Empowering People with Intellectual Disabilities in Innovation

publishedVersio

UNDERSTANDING THE PROBLEM – INNOVATION IN THE WELFARE SECTOR THROUGH ACTION DESIGN RESEARCH

Action design research (ADR) is a method to produce knowledge and solve real-world problems through the design of innovative IT/IS artifacts. The starting point for all design science research projects is the identification of a significant problem. However, ADR does not provide detailed guidance in the early stages of the problem formulation. This makes the initial problem formulation process challenging, especially when innovating new artifacts in complex settings. The paper contributes to this discussion by exploring how the Work Systems (WS) snapshot can be used as a tool for identifying and understanding a problem domain. The study leans on a project that focuses on the welfare sector and the transition from school to employment for persons with intellectual disability. We show that the WS snapshot can provide guidance and structure in conceptualizing the problem and that user journeys can assist in communicating the findings to practitioners. However, we encountered challenges relating to the scope and the granularity of the work system. In addition, the complexity of the welfare sector demands that significant time is spend on understanding not only the problem domain itself, but also the surrounding settings

Motivation of people with intellectual disabilities in technology design activities: the role of autonomy, competence, and relatedness

publishedVersio

‘I Got To Answer the Way I Wanted To’: Intellectual Disabilities and Participation in Technology Design Activities

User involvement in technology design processes can have positive implications for the designed service, but less is known about how such participation affects people with intellectual disabilities. We explored how 13 individuals with intellectual disabilities experienced participation in the design of a transport support application. The study is based on qualitative interviews, photovoice interviews, participant observations, and Smileyometer ratings. A thematic analysis generated the following themes: a sense of pride and ownership, an experience of socialization, and a sense of empowerment. The findings suggest that participation in design activities is a primarily positive experience that develops the participants’ skills. However, experiences such as boredom may occur. The variability within the experiences of the participants show that it is crucial to be aware of individuality, preferences, and personal interests when designing with people with intellectual disabilities.publishedVersio

Intellectual Disability, Digital Technologies, And Independent Transportation – A Scoping Review

Transportation is an essential aspect of everyday life. For people with intellectual disabilities transportation is one the largest barriers to community participation and a cause of inequality. However, digital technologies can reduce barriers for transportation use for people with intellectual disabilities and increase community mobility. The aim of this scoping review was to identify and map existing research on digital technology support for independent transport for people with intellectual disabilities and to identify knowledge gaps relevant for further research. The authors conducted a scoping review of articles presenting digital technologies designed to assist in outdoor navigation for people with intellectual disabilities. The search yielded 3195 items, of which 45 were reviewed and 13 included in this study. The results show that while a variation of design elements was utilized, digital technologies can effectively support individuals with intellectual disability in transport. Further research should focus on multiple contexts and types of transportation, different support needs during independent travel, real-world settings, participatory approaches, and the role of user training to enhance the adoption of digital technologies

Transitions from school to sheltered employment in Norway – Experiences of people with intellectual disabilities

publishedVersio

The importance of eHealth innovations : Lessons about patient accessible information

Access to digital information and communication has an increasing importance in both the work of healthcare professionals and in patients’ everyday life and has transformed what we do and how we carry out activities. It changes the way in which healthcare is delivered, how information is exchanged within and between organizations and how patients and other actors access and manage information. Currently, innovation is imperative in the healthcare sector and today there is a focus on how different eHealth services can improve healthcare. With increased access to various eHealth services, there is a need to know more about the impact of eHealth innovations on healthcare. The aim of this thesis is to acquire more knowledge about eHealth innovations in healthcare. The focus is on prerequisites to realize innovative eHealth services and eHealth services that provide patients with access to health information. The theoretical background addresses innovation, services and business models. This thesis is a compilatory work and includes five qualitative research papers. The first study is an interview study, the second is a literature review and the remaining three are case studies. The data collection consisted of interviews, surveys, workshops and secondary data collected from documents. The interview study and the case studies were performed in the Swedish eHealth setting. The research contributes to our understanding of eHealth innovations with insights on prerequisites to realize eHealth innovations and knowledge on patient accessible information. The first study provides a classification of prerequisites that need to be considered to realize innovative eHealth services. When dealing with eHealth services, organizational and sematic interoperability are still a challenge, and they transcend organizational boundaries. This thesis provides knowledge on the recent trend of opening up electronic health records to patients. The knowledge derived from the studies on patient accessible electronic health records show that there is a discrepancy between the perceptions of patients and healthcare professionals. The thesis concludes that patients feel more involved and that the patient-professional relationship improves with patient access to electronic health records, whereas healthcare professionals have concerns about how patients will manage access to health information. This thesis also provides empirical insights on how business models can be represented in a public eHealth setting. By viewing public eHealth services as social innovations, the thesis contributes to the research on business models in a public healthcare setting by incorporating societal value into the representation of the business model. The research in this thesis contributes to research in health informatics by discussing issues related to eHealth innovations and patient accessible information. Its practical importance lies in identifying issues that are important when discussing eHealth initiatives and the implications of giving patients online access to their electronic health record