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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

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

10.2196/preprints.19195 ◽

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

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

Sustainability ◽

10.3390/su13095221 ◽

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.

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