User-centred Design of a Digital Care Plan for Patients and Professionals in Cross-organisational Teams

Care for patients with multimorbidity and long-term complex needs is costly and with demographic changes this group is growing. The research project Dignity Care addresses how to improve the care for this patient group by studying how a conceptual shared digital care plan for complex clinical pathways can guide and support cross-organisational care teams. This paper presents the user-centred design process for the digital care plan development. Panels of patients and health care professionals will participate in co-creation user workshops and simulation of complex patients’ pathways. The main contribution from this work is recommendations for how to actively involve user groups in digital health development, applying a partly remote approach of user-centred design methodology during the Covid-19 pandemic

Patient pathways as social drama: A qualitative study of cancer trajectories from the patient’s perspective

Purpose: The number of persons living with and beyond cancer is increasing. Such persons often have complex needs that last, and change, over time. The aim of this study is to get insights of lived experience of person diagnosed with colorectal cancer and to create an understanding of cancer trajectories as a dynamic process. This study thus explores Victor Turner’s model of social drama in a cancer care context. Method: Turner suggests that crisis is a dynamic process structured by four phases: 1) breach of norm 2) crisis 3) redressive actions 4) reintegration or schism. The research team employed content analysis to explore material gathered through a series of qualitative interviews with nine Norwegian cancer patients over a period of one year. Results: To the authors’ knowledge, Turner’s model has not earlier been applied to such materials. The results show that Turner’s model of social drama is useful in achieving new and possibly important knowledge on illness trajectories from a lived experience perspective. Conclusions: The model of social drama may contribute to a deeper understanding of the processes patients are going through in long-term illness trajectories, demonstrating that illness is not a static matter.<p

“What matters to you?” A longitudinal qualitative study of Norwegian patients’ perspectives on their pathways with colorectal cancer

Purpose: Person-centred care (PCC) is a well-acknowledged goal throughout the western world both within the health care services sector and for the patients themselves. To be able to create a future health care system that includes improved PCC, we need more in-depth knowledge of what matters to patients, how “what matters” might change over time, and tentative descriptions of commonalities across patients’ perspectives. The aim of this study is to contribute to this knowledge base. Methods: We conducted a qualitative interview series over one year with nine Norwegian patients who were recently diagnosed with rectal cancer tumor-node-metastasis stage I–III. Results: We found that: (1) patients have an initial focus on “biological goals” and conventional treatment; (2) pathways are unique and dynamic; (3) family and friends affected patient pathways positively with respect to meaningfulness and quality of life, but for some participants also negatively because there were heavy burdens of caretaking; (4) receiving help in the health care system depended on the patients’ navigation skills; (5) pluralism in health-seeking behaviour was important in all patient pathways. Conclusion: Long lasting illness may be a dynamic and complex journey. These results represent some features of a pathway with cancer and are important because they contribute with knowledge about what matters most seen from the cancer patients’ point of view

User-centred Design of a Digital Care Plan for Patients and Professionals in Cross-organisational Teams

Care for patients with multimorbidity and long-term complex needs is costly and with demographic changes this group is growing. The research project Dignity Care addresses how to improve the care for this patient group by studying how a conceptual shared digital care plan for complex clinical pathways can guide and support cross-organisational care teams. This paper presents the user-centred design process for the digital care plan development. Panels of patients and health care professionals will participate in co-creation user workshops and simulation of complex patients’ pathways. The main contribution from this work is recommendations for how to actively involve user groups in digital health development, applying a partly remote approach of user-centred design methodology during the Covid-19 pandemic

User-centred Design of a Digital Care Plan for Patients and Professionals in Cross-organisational Teams

Care for patients with multimorbidity and long-term complex needs is costly and with demographic changes this group is growing. The research project Dignity Care addresses how to improve the care for this patient group by studying how a conceptual shared digital care plan for complex clinical pathways can guide and support cross-organisational care teams. This paper presents the user-centred design process for the digital care plan development. Panels of patients and health care professionals will participate in co-creation user workshops and simulation of complex patients’ pathways. The main contribution from this work is recommendations for how to actively involve user groups in digital health development, applying a partly remote approach of user-centred design methodology during the Covid-19 pandemic

How to enhance digital support for cross-organisational health care teams? A user-based explorative study

Health care service provision of individualised treatment to an ageing population prone to chronic conditions and multimorbidities is threatened. There is a need for digitally supported care, that is, (1) person-centred, (2) integrated, and (3) proactive. The research project 3P, Patients and Professionals in Productive Teams, aimed to validate and verify the prerequisites for health care systems run with patient-centred service models. This paper presents an explorative study of the digital support of a cross-organisational health care team in Norway, providing services to elderly frail people with multimorbidities in hospital discharge transition. Qualitative research methods were employed, with interviews and observations to map and evaluate the information flow and the digital support of collaborative work across organisations. The evaluation showed a lacking interoperability between the digital systems and a limited support for cross-organisational teamwork, causing raised manual efforts to maintain the information flow. Tools for coordination and planning across organisations were lacking. To enhance the situation, principles for a cloud-based health portal are proposed with a shared workspace, teamwork functionality for cross-organisational health care teams, and automatic back-end synchronisation of stored information. The main implications of this paper lie in the proposed principles which are transferable to a multitude of clinical contexts, where ad-hoc based access to shared medical information is of importance for decision-making and life-saving treatment

How to enhance digital support for cross-organisational health care teams? A user-based explorative study

Health care service provision of individualised treatment to an ageing population prone to chronic conditions and multimorbidities is threatened. (ere is a need for digitally supported care, that is, (1) person-centred, (2) integrated, and (3) proactive. (e research project 3P, Patients and Professionals in Productive Teams, aimed to validate and verify the prerequisites for health care systems run with patient-centred service models. (is paper presents an explorative study of the digital support of a crossorganisational health care team in Norway, providing services to elderly frail people with multimorbidities in hospital discharge transition. Qualitative research methods were employed, with interviews and observations to map and evaluate the information flow and the digital support of collaborative work across organisations. (e evaluation showed a lacking interoperability between the digital systems and a limited support for cross-organisational teamwork, causing raised manual efforts to maintain the information flow. Tools for coordination and planning across organisations were lacking. To enhance the situation, principles for a cloud-based health portal are proposed with a shared workspace, teamwork functionality for cross-organisational health care teams, and automatic back-end synchronisation of stored information. (e main implications of this paper lie in the proposed principles which are transferable to a multitude of clinical contexts, where ad-hoc based access to shared medical information is of importance for decision-making and life-saving treatment

Keeping one step ahead: A qualitative study among Norwegian health-care providers in hospitals involved in care coordination for patients with complex needs

Introduction: Various efforts aim to enhance continuity of care for patients with long-term health-care needs. Since 2012, Norwegian hospitals are mandated to appoint individual care coordinators for patients with complex needs to ensure continuity in the care pathway. New roles must meld with current practice. Implementation has been slow. This study investigates current care coordination across hospital contexts, from the perspective of health-care providers, a scarcely researched area. Methods: A qualitative study using semi-structured individual, duo, and group interviews with 16 purposefully selected Norwegian health-care providers from different hospitals, departments, professions and with various roles. A thematic cross-case analysis using systematic text condensation was performed. Results: Common for the interviewees’ care coordination experiences was to “keep one step ahead.” The scope of their coordination activities varied from diagnostics and treatment to orchestrating long-term, cross-sectional multidisciplinary care. This work was often performed without designated resources. The interviewees applied experience, knowledge, and sensitivity when defining the patients’ needs and searching for resources to orchestrate coordination work. They strived to balance the needs of patients with the resources available and adjusted the continuity ambitions on behalf of their patients to what they considered doable in the relevant contexts. However, many told of negotiating special solutions for selected patients with particularly complex needs. Discussion: Care coordination for patients with complex needs emerged as diverse and context-sensitive. Acknowledgement of coordination activities that go beyond established workflow routines and clinical pathways, together with flexible leadership support and accessible infrastructural resources are needed