scholarly journals How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study

10.2196/19195 ◽  
2020 ◽  
Vol 22 (9) ◽  
pp. e19195
Author(s):  
Carolina Wannheden ◽  
Åsa Revenäs
Keyword(s):  
Parkinson’S Disease ◽  
Health Care ◽  
Parkinson's Disease ◽  
Health Care Professionals ◽  
Care Management ◽  
Chronic Care ◽  
Self Care ◽  
Chronic Care Management ◽  
Organizational Constraints ◽  
Ehealth Service

Background Worldwide, 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. Objective This 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. Methods Principles 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 functional prototype that was evaluated by the co-design participants in the last workshop. Data were collected through note cards produced by the participants during the first 3 workshops and focus group discussions during the 3rd and 4th workshops. The data were analyzed using qualitative thematic analysis. After the workshop series, the prototype was demonstrated at a Mini Fair for ongoing PD research and evaluated using a self-developed questionnaire with 37 respondents: 31 PwP (14 women) and 6 informal caregivers (3 women). Descriptive statistics are reported. Results The qualitative analysis of data resulted in 2 main themes. The first theme, core eHealth functionalities and their expected values, describes 6 desired eHealth functionalities for supporting PD co-care between PwP and HCPs: (1) self-tracking, (2) previsit forms, (3) graphical visualization, (4) clinical decision support, (5) self-care recommendations, and (6) asynchronous communication. The second theme, individual and organizational constraints, describes constraints that need to be addressed to succeed with an eHealth service for co-care. Individual constraints include eHealth literacy and acceptance; organizational constraints include teamwork and administrative workload. The majority of the questionnaire respondents (31/37, 84%) perceived that they would benefit from an eHealth service similar to the demonstrated prototype. All prototype functionalities were rated as very important or important by the majority of respondents (ranging from 86% to 97% per functionality). Conclusions This study adds to our knowledge on how PD co-care could be operationalized. Co-care implies a shift from episodic routine-driven care to more flexible care management that is driven by the mutual needs of patients and HCPs and supported by active information exchange between them, as well as automated information processing to generate patient-specific advice. More research is needed to further explore the concept of co-care in chronic care management and what it means for self-care and health care. International Registered Report Identifier (IRRID) RR2-10.2196/11278

scholarly journals How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study (Preprint)

2020 ◽  
Author(s):  
Carolina Wannheden ◽  
Åsa Revenäs
Keyword(s):  
Parkinson’S Disease ◽  
Health Care ◽  
Parkinson's Disease ◽  
Health Care Professionals ◽  
Care Management ◽  
Chronic Care ◽  
Self Care ◽  
Chronic Care Management ◽  
Organizational Constraints ◽  
Ehealth Service

BACKGROUND Worldwide, 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. OBJECTIVE This 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. METHODS Principles 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 functional prototype that was evaluated by the co-design participants in the last workshop. Data were collected through note cards produced by the participants during the first 3 workshops and focus group discussions during the 3rd and 4th workshops. The data were analyzed using qualitative thematic analysis. After the workshop series, the prototype was demonstrated at a Mini Fair for ongoing PD research and evaluated using a self-developed questionnaire with 37 respondents: 31 PwP (14 women) and 6 informal caregivers (3 women). Descriptive statistics are reported. RESULTS The qualitative analysis of data resulted in 2 main themes. The first theme, core eHealth functionalities and their expected values, describes 6 desired eHealth functionalities for supporting PD co-care between PwP and HCPs: (1) self-tracking, (2) previsit forms, (3) graphical visualization, (4) clinical decision support, (5) self-care recommendations, and (6) asynchronous communication. The second theme, individual and organizational constraints, describes constraints that need to be addressed to succeed with an eHealth service for co-care. Individual constraints include eHealth literacy and acceptance; organizational constraints include teamwork and administrative workload. The majority of the questionnaire respondents (31/37, 84%) perceived that they would benefit from an eHealth service similar to the demonstrated prototype. All prototype functionalities were rated as very important or important by the majority of respondents (ranging from 86% to 97% per functionality). CONCLUSIONS This study adds to our knowledge on how PD co-care could be operationalized. Co-care implies a shift from episodic routine-driven care to more flexible care management that is driven by the mutual needs of patients and HCPs and supported by active information exchange between them, as well as automated information processing to generate patient-specific advice. More research is needed to further explore the concept of co-care in chronic care management and what it means for self-care and health care. INTERNATIONAL REGISTERED REPORT RR2-10.2196/11278

scholarly journals What’s the Name of the Game? The Impact of eHealth on Productive Interactions in Chronic Care Management

2021 ◽  
Vol 13 (9) ◽  
pp. 5221
Author(s):  
Carolina Wannheden ◽  
Ulrica von Thiele Schwarz ◽  
Claes-Göran Östenson ◽  
Karin Pukk Härenstam ◽  
Terese Stenfors
Keyword(s):  
Care Management ◽  
Chronic Care ◽  
Digital Health ◽  
Self Care ◽  
Self Monitoring ◽  
Health Technologies ◽  
Chronic Care Management ◽  
The Impact ◽  
Ehealth Service

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 in expressions of uncertainty and in blurred boundaries between self-care and healthcare. We conclude that the attainment of a sustainable eHealth ecosystem will require healthcare to acknowledge eHealth as a disruptive change that may require re-organization to optimally support the productive use of eHealth services for both patients and staff, which includes agreement on new routines, as well as social interaction rules.

scholarly journals Co-Designing an eHealth Service for the Co-Care of Parkinson Disease: Explorative Study of Values and Challenges (Preprint)

2018 ◽  
Author(s):  
Åsa Revenäs ◽  
Helena Hvitfeldt Forsberg ◽  
Emma Granström ◽  
Carolina Wannheden
Keyword(s):  
Health Care ◽  
Parkinson Disease ◽  
Health Care Professionals ◽  
Information Exchange ◽  
Chronic Conditions ◽  
Qualitative Content Analysis ◽  
Self Care ◽  
Time Investment ◽  
Health And Social Care ◽  
Ehealth Service

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-design workshops aimed at designing an eHealth service for co-care for Parkinson disease, with a particular focus on the perceptions of values and challenges of co-design as well as improvement suggestions. METHODS We conducted 4 half-day co-design workshops with 7 people with Parkinson disease and 9 health care professionals. Data were collected during the workshop series using formative evaluations with participants and facilitators after each workshop, researchers’ diary notes throughout the co-design process, and a Web-based questionnaire after the final workshop. Quantitative data from the questionnaire were analyzed using descriptive statistics. Qualitative data were triangulated and analyzed inductively using qualitative content analysis. RESULTS Quantitative ratings showed that most participants had a positive general experience of the co-design workshops. Qualitative analysis resulted in 6 categories and 30 subcategories describing respondents’ perceptions of the values and challenges of co-design and their improvement suggestions. The categories concerned (1) desire for more stakeholder variation; (2) imbalance in the collaboration between stakeholders; (3) time investment and commitment paradox; (4) desire for both flexibility and guidance; (5) relevant workshop content, but concerns about goal achievement; and (6) hopes and doubts about future care. CONCLUSIONS Based on the identified values and challenges, some paradoxical experiences were revealed, including (1) a desire to involve more stakeholders in co-design, while preferring to work in separate groups; (2) a desire for more preparation and discussions, while the required time investment was a concern; and (3) the experience that co-design is valuable for improving care, while there are doubts about the realization of co-care in practice. The value of co-design is not mainly about creating new services; it is about improving current practices to shape better care. The choice of methods needs to be adjusted to the stakeholder group and context, which will influence how they experience the process and outcomes of co-design.

1281-P: Proactive Chronic Care Management for Patients with Poorly Controlled Diabetes in an Academic Health-Care System: The Emory Diabetes Management Program

Diabetes ◽  
2019 ◽  
Vol 68 (Supplement 1) ◽  
pp. 1281-P
Author(s):  
ANDIRAN AYANAMBAKKAM NAMBI ◽  
ZIRKA T. SMITH ◽  
MARGARET S. PRESSWOOD ◽  
SOL JACOBS ◽  
ALISA F. MCALEER ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care System ◽  
Care Management ◽  
Chronic Care ◽  
Diabetes Management ◽  
Management Program ◽  
Academic Health ◽  
Chronic Care Management ◽  
Diabetes Management Program ◽  
Care System
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