Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author). 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.

Background: An increasing number of patients expect and want to play a greater role in their treatment and care decisions. This emphasizes the need to adopt collaborative health care practices, which implies collaboration among interprofessional health care teams and patients, their families, caregivers, and communities. In recent years, digital health technologies that support self-care and collaboration between the community and health care providers (ie, participatory health technologies) have received increasing attention. However, knowledge regarding the features of such technologies that support effective patient-professional partnerships is still limited. Objective: This study aimed to map and assess published studies on participatory health technologies intended to support partnerships among patients, caregivers, and health care professionals in chronic care, focusing specifically on identifying the main features of these technologies. Methods: A scoping review covering scientific publications in English between January 2008 and December 2020 was performed. We searched PubMed and Web of Science databases. Peer-reviewed qualitative, quantitative, and mixed methods studies that evaluated digital health technologies for patient-professional partnerships in chronic care settings were included. The data were charted and analyzed thematically. The PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist was used. Results: This review included 32 studies, reported in 34 papers. The topic of participatory health technologies experienced a slightly increasing trend across publication years, with most papers originating from the United States and Norway. Diabetes and cardiovascular diseases were the most common conditions addressed. Of the 32 studies, 12 (38%) evaluated the influence of participatory health technologies on partnerships, mostly with positive outcomes, although we also identified how partnership relationships and the nature of collaborative work could be challenged when the roles and expectations between users were unclear. Six common features of participatory health technologies were identified: patient-professional communication, self-monitoring, tailored self-care support, self-care education, care planning, and community forums for peer-to-peer interactions. Conclusions: Our findings emphasize the importance of clarifying mutual expectations and carefully considering the implications that the introduction of participatory health technologies may have on the work of patients and health care professionals, both individually and in collaboration. A knowledge gap remains regarding the use of participatory health technologies to effectively support patient-professional partnerships in chronic care management.

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

Long-term adherence to physical activity recommendations remains challenging for most individuals with rheumatoid arthritis (RA) despite evidence for its health benefits. The aim of this study was to provide basic data on system requirement specifications for a Web-based and mobile app to self-manage physical activity. More specifically, we explored the target user group, features of the future app, and correlations between the system requirements and the established behavior change techniques (BCTs). We used a participatory action research design. Qualitative data were collected using multiple methods in four workshops. Participants were 5 individuals with RA, a clinical physiotherapist, an officer from the Swedish Rheumatism Association, a Web designer, and 2 physiotherapy researchers. A taxonomy was used to determine the degree of correlation between the system requirements and established BCTs. Participants agreed that the future Web-based and mobile app should be based on two major components important for maintaining physical activity: (1) a calendar feature for goal setting, planning, and recording of physical activity performance and progress, and (2) a small community feature for positive feedback and support from peers. All system requirements correlated with established BCTs, which were coded as 24 different BCTs. To our knowledge, this study is the first to involve individuals with RA as co-designers, in collaboration with clinicians, researchers, and Web designers, to produce basic data to generate system requirement specifications for an eHealth service. The system requirements correlated to the BCTs, making specifications of content and future evaluation of effectiveness possible.

This paper investigates seniors’ and health care professionals’ (HCPs) perceptions on needed contributions and qualities of digital technology-based motivation support for seniors’ physical activity (PA). Seniors and HCPs expressed their views in focus groups, which were analyzed separately by inductive content analysis. Similarities and differences in seniors’ and HCPs’ views were identified through thematic analysis of qualitative results from both focus groups. This article’s main findings are that both seniors and HCPs believed digital technology should support and make PA more enjoyable in ways to strengthen seniors’ control and well-being. However, seniors emphasized support for social interaction, while HCPs also requested support for increasing seniors’ insight into PA and for facilitating their dialogue with seniors. Conclusions to be drawn are that seniors and HPCs shared overall views on digital technology’s main contributions but had different perspectives on how those contributions could be obtained. This highlights the importance of the early identification of user groups and exploration of their different needs when developing new solutions. Moreover, seniors’ and HCPs’ perceptions included aspects relevant for personal motivation, technology acceptance, and PA behavioral change according to self-determination theory, unified theory of acceptance and use of technology, and behavioral change techniques for increasing PA.

Objectives Life-long adherence to health-enhancing physical activity (PA) is a major challenge for people with rheumatoid arthritis (RA). Our aim was to evaluate the utilisation of and experiences with a RA-specific, mobile internet PA support service, ‘tRAppen’, developed through a co-design process. Methods 28 participants with RA formed 3 web communities and tested tRAppen for 6 weeks. A mixed-method design was used to combine different types of data. Log data and questionnaire data were analysed quantitatively, while data from telephone interviews were analysed with a directed content analysis. Results 25 of the 28 participants used tRAppen. Log data indicated that a majority of them registered their PA, sent likes and posted comments to peers, set personal goals and made exercise plans. tRAppen was rated as easy and fun to use, and fairly informative and supportive for PA, and was highly recommended for people with RA. The interview analysis resulted in the following 6 categories describing the utilisation of and experiences with tRAppen: (1) experiences in general, (2) feasibility of features, (3) value as support for PA, (4) enjoyment, (5) ideas for improvements and (6) additional factors. Conclusions tRAppen is the first co-designed mobile internet service developed specifically for the self-management of PA in people with RA. The results are promising and indicate that tRAppen may be useful for supporting a physically active lifestyle in a subpopulation at certain risk of poor health. It will now be revised, launched and continuously updated in an iterative process involving its future users.