22
views
0
recommends
+1 Recommend
1 collections
    0
    shares

      To submit your manuscript to JMIR, please click here

      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

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

      research-article
      , MSc, PhD 1 , , , MSc, PhD 2 , 3
      (Reviewer), (Reviewer)
      Journal of Medical Internet Research
      JMIR Publications
      chronic care, Parkinson's disease, co-creation, co-design, participatory design, eHealth, mHealth, clinical decision support

      Read this article at

      ScienceOpenPublisherPMC
      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          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

          Related collections

          Most cited references57

          • Record: found
          • Abstract: not found
          • Article: not found

          Using thematic analysis in psychology

            Bookmark
            • Record: found
            • Abstract: found
            • Article: not found

            The Law of Attrition

            In an ongoing effort of this Journal to develop and further the theories, models, and best practices around eHealth research, this paper argues for the need for a “science of attrition”, that is, a need to develop models for discontinuation of eHealth applications and the related phenomenon of participants dropping out of eHealth trials. What I call “law of attrition” here is the observation that in any eHealth trial a substantial proportion of users drop out before completion or stop using the appplication. This feature of eHealth trials is a distinct characteristic compared to, for example, drug trials. The traditional clinical trial and evidence-based medicine paradigm stipulates that high dropout rates make trials less believable. Consequently eHealth researchers tend to gloss over high dropout rates, or not to publish their study results at all, as they see their studies as failures. However, for many eHealth trials, in particular those conducted on the Internet and in particular with self-help applications, high dropout rates may be a natural and typical feature. Usage metrics and determinants of attrition should be highlighted, measured, analyzed, and discussed. This also includes analyzing and reporting the characteristics of the subpopulation for which the application eventually “works”, ie, those who stay in the trial and use it. For the question of what works and what does not, such attrition measures are as important to report as pure efficacy measures from intention-to-treat (ITT) analyses. In cases of high dropout rates efficacy measures underestimate the impact of an application on a population which continues to use it. Methods of analyzing attrition curves can be drawn from survival analysis methods, eg, the Kaplan-Meier analysis and proportional hazards regression analysis (Cox model). Measures to be reported include the relative risk of dropping out or of stopping the use of an application, as well as a “usage half-life”, and models reporting demographic and other factors predicting usage discontinuation in a population. Differential dropout or usage rates between two interventions could be a standard metric for the “usability efficacy” of a system. A “run-in and withdrawal” trial design is suggested as a methodological innovation for Internet-based trials with a high number of initial dropouts/nonusers and a stable group of hardcore users.
              Bookmark
              • Record: found
              • Abstract: not found
              • Article: not found

              Co-creation and the new landscapes of design

                Bookmark

                Author and article information

                Contributors
                Journal
                J Med Internet Res
                J Med Internet Res
                JMIR
                Journal of Medical Internet Research
                JMIR Publications (Toronto, Canada )
                1439-4456
                1438-8871
                September 2020
                21 September 2020
                : 22
                : 9
                : e19195
                Affiliations
                [1 ] Medical Management Centre Department of Learning, Informatics, Management and Ethics (LIME) Karolinska Institutet Stockholm Sweden
                [2 ] Centre for Clinical Research County of Västmanland Uppsala University Västerås Sweden
                [3 ] School of Health, Care and Social Welfare Division of Physiotherapy Mälardalen University Västerås Sweden
                Author notes
                Corresponding Author: Carolina Wannheden carolina.wannheden@ 123456ki.se
                Author information
                https://orcid.org/0000-0003-2122-1083
                https://orcid.org/0000-0003-3419-9292
                Article
                v22i9e19195
                10.2196/19195
                7536604
                32955448
                f42d5f5d-b408-425a-97d1-33a24a7a86b4
                ©Carolina Wannheden, Åsa Revenäs. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 21.09.2020.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

                History
                : 8 April 2020
                : 26 May 2020
                : 4 July 2020
                : 26 July 2020
                Categories
                Original Paper
                Original Paper

                Medicine
                chronic care,parkinson's disease,co-creation,co-design,participatory design,ehealth,mhealth,clinical decision support

                Comments

                Comment on this article