Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Apr 8, 2020
Date Accepted: Jul 26, 2020
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
How People with Parkinson's Disease and Healthcare Professionals Wish to Partner in Care using eHealth: A Co-design Study
ABSTRACT
Background:
Worldwide, the number of people with Parkinson’s disease (PwP) is predicted to double between the years 2005 and 2030. Given this predicted increase and the limited availability of healthcare resources, eHealth/mHealth services have the potential to provide considerable support for PwP's self-management and collaboration with healthcare professionals (HCPs). Chronic care management requires a different practice of healthcare compared to the management of acute conditions, emphasizing both patients’ and HCP's knowledge and active collaboration for best possible health outcomes, which has been described as 'co-care'.
Objective:
The aim of this study was to explore how co-care could be operationalized in PD care, supported by eHealth/mHealth. More specifically, this study explores PwP's and HCPs' expectations and desired eHealth/mHealth functionalities to achieve co-care.
Methods:
Principles of participatory design were used to enable the identification of PwP's and HCP's views on co-care. The collaborative work was performed in a series of four half-day co-design workshops. Seven (4 women) PwP and 9 HCPs (4 women) participated; 4 neurologists, 3 nurses and 2 physiotherapists. Data were collected through note cards produced by the participants during the first 3 workshops and focus group discussions during the 3rd and 4th workshop. The focus groups were transcribed verbatim. The data were analyzed using qualitative thematic analysis.
Results:
The qualitative analysis of data resulted in two main themes. The first theme, Core eHealth functionalities and their expected values, describes six desired eHealth functionalities for supporting Parkinson's disease co-care between PwP and HCP: 1) self-tracking, 2) pre-visit questionnaires, 3) graphical visualization, 4) clinical decision support, 5) self-care recommendations, 6) asynchronous communication). The second theme, Individual and organizational constraints, describes constraints that need to be addressed to succeed with an eHealth/mHealth service for co-care. Individual constraints: eHealth literacy and acceptance; organizational constraints: teamwork and administrative workload.
Conclusions:
This study adds to our knowledge on how co-care in Parkinson's Disease care could be operationalized. Co-care implies a shift from episodic routine-driven care to more flexible care management that is driven by patients' needs and enabled by active information exchange between PwP and HCPs and further supported by 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 healthcare.
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