Co-designing a mobile Internet service for self-management of physical activity in rheumatiod arthritis

Aim: The overall aim of the thesis was to describe and evaluate the content and outcome of co-designing a mobile Internet service for self-management of physical activity in rheumatoid arthritis (RA) with active lead user involvement, within the action research paradigm. Context: Physical activity is known for its health benefits. However, maintaining a physically active lifestyle is a great challenge for most people, and maybe even more so for people living with RA. IT and mobile phones provide additional means to deliver health care services, i.e. mHealth, for physical activity self-management. Further, involvement of lead users in the development of services has been reported to improve their usability and effectiveness. Process: In the first phase of the co-design process, six focus group interviews were performed with lead users (n=26) to explore their ideas on core features (Study I). In the next phase, four workshops were conducted, which included lead users, clinical and researcher physiotherapists, an eHealth strategist and an officer from the Swedish Rheumatism Association (n=10). The aim was to specify the system requirements of the future service (Study II and III). Video recordings, natural observations, prototypes of the future service and an online notice board were used to collect data on the requirements and challenges of co-design. In the third phase, the first test version of the service was produced and evaluate in terms of the participants’ utilization of and experiences with the service (Study IV). Log-data were collected during the six week test period. Web questionnaires were sent out to and telephone interviews were performed with the participants after the test period. Content: Four core aspects that are important to consider in the development of the mHealth service were identified: features, customized options, user interface, and access and implementation (result Study I). To produce the requirements specification, the participants had to merge their different perspectives, which was the core challenge of codesign (Study II). The merging resulted in “tRAppen”, an mHealth service for maintenance of physical activity. tRAppen included two key components: 1) “My self-regulation features” and 2) “My peer support features” (result Study III). The first test version of tRAppen included 22 different behavior change techniques. Outcome: Twenty-eight participants tested tRAppen (result Study IV). Most participants registered physical activity, sent likes and made an exercise plan. tRAppen was generally rated as easy and fun to use, and all participants would recommend it to other people. The results also described the experiences of using tRAppen as being influenced by physical and mental state and personal preferences. Conclusions: The use of co-design in the development of the physical activity selfmanagement service tRAppen was successful. The first test version of tRAppen was perceived as feasible and to have the potential to support a physically active lifestyle in people with RA. Co-design in collaborative workshops was an extensive decision-making process that put high demands on the participants’ ability to find solutions, negotiate, come to agreements and reach final decisions

Lead users’ ideas on core features to support physical activity in rheumatoid arthritis: a first step in the development of an internet service using participatory design

BACKGROUND: Despite the growing evidence of the benefits of physical activity (PA) in individuals with rheumatoid arthritis (RA), the majority is not physically active enough. An innovative strategy is to engage lead users in the development of PA interventions provided over the internet. The aim was to explore lead users’ ideas and prioritization of core features in a future internet service targeting adoption and maintenance of healthy PA in people with RA. METHODS: Six focus group interviews were performed with a purposively selected sample of 26 individuals with RA. Data were analyzed with qualitative content analysis and quantification of participants’ prioritization of most important content. RESULTS: Six categories were identified as core features for a future internet service: up-to-date and evidence-based information and instructions, self-regulation tools, social interaction, personalized set-up, attractive design and content, and access to the internet service. The categories represented four themes, or core aspects, important to consider in the design of the future service: (1) content, (2) customized options, (3) user interface and (4) access and implementation. CONCLUSIONS: This is, to the best of our knowledge, the first study involving people with RA in the development of an internet service to support the adoption and maintenance of PA. Participants helped identifying core features and aspects important to consider and further explore during the next phase of development. We hypothesize that involvement of lead users will make transfer from theory to service more adequate and user-friendly and therefore will be an effective mean to facilitate PA behavior change

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

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

"It's up to me" : the experience of patients at high risk of cardiovascular disease of lifestyle change

Objective Despite knowledge of the effect of lifestyle changes in preventing cardiovascular disease, a large proportion of people have unhealthy lifestyle habits. The aim of our study is a) to explore the experiences of participants at high risk of CVD of lifestyle change after participation in a one-year structured lifestyle counselling programme and b) to link the techniques and strategies used by the participants to the processes of the transtheoretical model of behaviour change (TTM). Design A qualitative explorative design was used to collect data on participants' experiences. An abductive content analysis was conducted using the processes within TTM for the deductive analysis. Setting Patients that participated in a one-year lifestyle counselling programme in Swedish primary care, were interviewed. Subjects Eight men and eight women, aged 51-75 years, diagnosed with hypertension or type 2 diabetes mellitus. Main outcome measures Experiences of lifestyle change in patients at high cardiovascular risk. Results The analysis yielded four dimensions that assisted lifestyle change: 'The value of knowledge', 'Taking control', 'Gaining trust in oneself' and 'Living with a chronic condition'. The theme 'It's up to me' illustrated that lifestyle change was a personal matter and responsibility. Conclusion Enhanced knowledge, self-efficacy, support from others and the individual's insight that it was his/her own decisions and actions that mattered were core factors to adopt healthier lifestyle habits. Practice Implications:Although lifestyle change is a personal matter, the support provided by primary healthcare professionals and significant others is essential to increase self-efficacy and motivate lifestyle change

Lifestyle counselling : a long-term commitment based on partnership

Background Lifestyle habits are important factors in the development of non-communicable diseases. Different ways of providing counselling in primary care to promote healthier lifestyle habits have been launched and evaluated in recent years. It is important to provide an insight into what makes lifestyle counselling useful for patients and healthcare providers. Objective The overall aim of this study was to explore patients ' and community health nurses '(CHNs) experiences of lifestyle counselling in primary care to support healthier lifestyle habits. Methods Patients and CHNs were interviewed, face to face. Sixteen patients (eight men, eight women, aged 51-75 years) diagnosed with hypertension or type 2 diabetes mellitus and three CHNs participated. Data material was analysed with qualitative content analysis to explore the participants experiences of lifestyle counselling. Results The theme demonstrates that lifestyle counselling is a long-term commitment based on partnership between patients and CHNs. Five categories describe this partnership: respect and mutual interest, understanding of illness, measurements and goal setting, long-term support, and a structure to support counselling within the primary care unit. Conclusion The results from this study are consistent with and add to previous understanding of how lifestyle counselling can be performed successfully in the context of primary health care. The results emphasize that lifestyle counselling should encompass a partnership based on mutual respect, recognition of the patient as the expert on his/her current life situation, and the need for both parties to engage in the process of lifestyle change. Practice implications A structured lifestyle program with five counselling sessions within primary care was experienced as helpful for enhanced lifestyle habits and considered to be feasible by both patients and CHNs

Towards multimodal boosting of motivation for fall-preventive physical activity in seniors : An iterative development evaluation study

Background: Many seniors need to increase their physical activity (PA) and participation in fall prevention exercise. Therefore, digital systems have been developed to support fall-preventive PA. Most of them lack video coaching and PA monitoring, two functionalities that may be relevant for increasing PA. Objective: To develop a prototype of a system to support seniors' fall-preventive PA, which includes also video coaching and PA monitoring, and to evaluate its feasibility and user experience. Methods: A system prototype was conceived by integrating applications for step-monitoring, behavioural change support, personal calendar, video-coaching and a cloud service for data management and co-ordination. Its feasibility and user experience were evaluated in three consecutive test periods combined with technical development. In total, 11 seniors tested the system at home for four weeks with video coaching from health care professionals. Results: Initially, the system's feasibility was non-satisfactory due to insufficient stability and usability. However, most problems could be addressed and amended. In the third (last) test period, both seniors and coaches experienced the system prototype to be fun, flexible and awareness-raising. Interestingly, the video coaching which made the system unique compared to similar systems was highly appreciated. Nonetheless, even the users in the last test period highlighted issues due to insufficient usability, stability and flexibility. Further improvements in these areas are needed. Conclusions: Video coaching in fall-preventive PA can be valuable for both seniors and health care professionals. High reliability, usability and flexibility of systems supporting seniors are essential

User-centered requirements engineering to manage the fuzzy front-end of open innovation in e-health : A study on support systems for seniors' physical activity

Background: Although e-health potentials for improving health systems in their safety, quality and efficiency has been acknowledged, a large gap between the postulated and empirically demonstrated benefits of e-health technologies has been ascertained. E-health development has classically been technology-driven, often resulting in the design of devices and applications that ignore the complexity of the real-world setting, thus leading to slow diffusion of innovations to care. Therefore, e-health innovation needs to consider the mentioned complexity already from the start. The early phases of innovation, fuzzy front-end (FFE) defined as "the period between when an opportunity is first considered and when an idea is judged ready for development" has been identified to have the highest impact on the innovation process and its outcome. The FFE has been recognized as the most difficult stage to manage in the innovation process as it involves a high degree of uncertainty. Such a phase becomes even more difficult when different sectors and organizations are involved. Therefore, effective methods for involving different organizations and user groups in the FFE of innovation are needed. Objective: The aim of this study was to manage the FFE of a collaborative, open innovation (OI) process, to define a software system supporting seniors' physical activity (PA) by applying a framework of methods from software requirements engineering (RE) to elicit and analyze needs and requirements of users and stakeholders, as well as the context in which the system should be used. Methods: Needs and requirements of three future user groups were explored through individual-and focus group interviews. Requirements were categorized and analyzed in a workshop with a multidisciplinary team: a system overview was produced by conceptual modelling using elicited functional requirements; high-level non-functional requirements were negotiated and prioritized. Scenario descriptions of system's supportive roles in different phases of a behavioral change process were developed. Results: User-centered RE methods were successfully used to define a system and a high-level requirements description was developed based on needs and requirements from three identified user groups. The system aimed to support seniors' motivation for PA and contained four complementary sub-systems. The outcome of the study was a Concept of Operations (ConOps) document that specified the high-level system requirements in a way that was understandable for stakeholders. This document was used both to identify and recruit suitable industrial partners for the following open innovation development and to facilitate communication and collaboration in the innovation process. Conclusions: Applying software RE methods and involving user groups in the early phases of OI can contribute to the development of new concepts that meet complex real-world requirements. Different user groups can complement each other in conveying needs and requirements from which systems can be designed. Empirical studie

A mobile internet service for self-management of physical activity in people with reumathoid arthritis : Challenges in advancing the co-design process during the requirements specification phase

Background: User involvement in the development of health care services is important for the viability, usability, and effectiveness of services. This study reports on the second step of the co-design process. Objective: The aim was to explore the significant challenges in advancing the co-design process during the requirements specification phase of a mobile Internet service for the self-management of physical activity (PA) in rheumatoid arthritis (RA). Methods: A participatory action research design was used to involve lead users and stakeholders as co-designers. Lead users (n=5), a clinical physiotherapist (n=1), researchers (n=2) with knowledge in PA in RA and behavioral learning theories, an eHealth strategist (n=1), and an officer from the patient organization (n=1) collaborated in 4 workshops. Data-collection methods included video recordings and naturalistic observations. Results: The inductive qualitative video-based analysis resulted in 1 overarching theme, merging perspectives, and 2 subthemes reflecting different aspects of merging: (1) finding a common starting point and (2) deciding on design solutions. Seven categories illustrated the specific challenges: reaching shared understanding of goals, clarifying and handling the complexity of participants’ roles, clarifying terminology related to system development, establishing the rationale for features, negotiating features, transforming ideas into concrete features, and participants’ alignment with the agreed goal and task. Conclusions: Co-designing the system requirements of a mobile Internet service including multiple stakeholders was a complex and extensive collaborative decision-making process. Considering, valuing, counterbalancing, and integrating different perspectives into agreements and solutions (ie, the merging of participants’ perspectives) were crucial for moving the process forward and were considered the core challenges of co-design. Further research is needed to replicate the results and to increase knowledge on key factors for a successful co-design of health care services