Guido Giunti | Trinity College Dublin (original) (raw)

Papers by Guido Giunti

Springer series in design and innovation, Nov 4, 2023

Background: Multiple sclerosis (MS) is one of the world's most common neurologic disorders, with ... more Background: Multiple sclerosis (MS) is one of the world's most common neurologic disorders, with symptoms such as fatigue, cognitive problems, and issues with mobility. Evidence suggests that physical activity (PA) helps people with MS reduce fatigue and improve quality of life. The use of mobile technologies for health has grown in recent years with little involvement from relevant stakeholders. User-centered design (UCD) is a design philosophy with the goal of creating solutions specific to the needs and tasks of the intended users. UCD involves stakeholders early and often in the design process. In a preliminary study, we assessed the landscape of commercially available MS mobile health (mHealth) apps; to our knowledge, no study has explored what persons with MS and their formal care providers think of mHealth solutions for PA. Objective: The aim of this study was to (1) explore MS-specific needs for MS mHealth solutions for PA, (2) detect perceived obstacles and facilitators for mHealth solutions from persons with MS and health care professionals, and (3) understand the motivational aspects behind adoption of mHealth solutions for MS. Methods: A mixed-methods design study was conducted in Kliniken Valens, Switzerland, a clinic specializing in neurological rehabilitation. We explored persons with MS and health care professionals who work with them separately. The study had a qualitative part comprising focus groups and interviews, and a quantitative part with standardized tools such as satisfaction with life scale and electronic health (eHealth) literacy. Results: A total of 12 persons with relapsing-remitting MS and 12 health care professionals from different backgrounds participated in the study. Participants were well-educated with an even distribution between genders. Themes identified during analysis were MS-related barriers and facilitators, mHealth design considerations, and general motivational aspects. The insights generated were used to create MS personas for design purposes. Desired mHealth features were as follows: (1) activity tracking, (2) incentives for completing tasks and objectives, (3) customizable goal setting, (4) optional sociability, and (5) game-like attitude among others. Potential barriers to mHealth apps adoption were as follows: (1) rough on-boarding experiences, (2) lack of clear use benefits, and (3) disruption of the health care provider-patient relationship. Potential facilitators were identified: (1) endorsements from experts, (2) playfulness, and (3) tailored to specific persons with MS needs. A total of 4 MS personas were developed to provide designers and computer scientists means to help in the creation of future mHealth solutions for MS. Conclusions: mHealth solutions for increasing PA in persons with MS hold promise. Allowing for realistic goal setting and positive feedback, while minimizing usability burdens, seems to be critical for the adoption of such apps. Fatigue management is especially important in this population; more attention should be brought to this area.

Background: Chronic conditions are the leading cause of death in the world. Major improvements in... more Background: Chronic conditions are the leading cause of death in the world. Major improvements in acute care and diagnostics have created a tendency toward the chronification of formerly terminal conditions, requiring people with these conditions to learn how to self-manage. Mobile technologies hold promise as self-management tools due to their ubiquity and cost-effectiveness. The delivery of health-related services through mobile technologies (mobile health, mHealth) has grown exponentially in recent years. However, only a fraction of these solutions take into consideration the views of relevant stakeholders such as health care professionals or even patients. The use of behavioral change models (BCMs) has proven important in developing successful health solutions, yet engaging patients remains a challenge. There is a trend in mHealth solutions called gamification that attempts to use game elements to drive user behavior and increase engagement. As it stands, designers of mHealth solutions for behavioral change in chronic conditions have no clear way of deciding what factors are relevant to consider. Objective: The goal of this work is to discover factors for the design of mHealth solutions for chronic patients using negotiations between medical knowledge, BCMs, and gamification. Methods: This study uses an embedded case study research methodology consisting of 4 embedded units: 1) cross-sectional studies of mHealth applications; 2) statistical analysis of gamification presence; 3) focus groups and interviews to relevant stakeholders; and 4) research through design of an mHealth solution. The data obtained was thematically analyzed to create a conceptual model for the design of mHealth solutions. Results: The Model for Motivational Mobile-health Design (3MD) for chronic conditions guides the design of condition-oriented gamified behavioral change mHealth solutions. The main components are (1) condition specific, which describe factors that need to be adjusted and adapted for each particular chronic condition; (2) motivation related, which are factors that address how to influence behaviors in an engaging manner; and (3) technology based, which are factors that are directly connected to the technical capabilities of mobile technologies. The 3MD also provides a series of high-level illustrative design questions for designers to use and consider during the design process. Conclusions: This work addresses a recognized gap in research and practice, and proposes a unique model that could be of use in the generation of new solutions to help chronic patients.

JMIR Research Protocols, Aug 4, 2020

Background: Multiple sclerosis (MS) is one of the world's most common neurologic disorders leadin... more Background: Multiple sclerosis (MS) is one of the world's most common neurologic disorders leading to severe disability in young adults. MS-related fatigue directly impacts on the quality of life and activity levels of people with MS. Self-management strategies are used to support them in the care of their health. Mobile health (mHealth) solutions can offer tools to help symptom management. Following a user-centered design and evidence-based process, an mHealth solution called More Stamina was created to help persons with MS manage their fatigue. Objective: The overall study aims are to explore the feasibility, acceptability, and usability of More Stamina, a mobile app for fatigue self-management for persons with MS. Methods: A mixed-methods, multicenter study will be used to assess the feasibility, acceptability, and usability of More Stamina. The study will take place during the third and fourth quarters of 2020 (Q3-Q4 2020) in 3 locations: Argentina, Spain, and Switzerland. A longitudinal cohort study will take place, and think-aloud protocols, open-ended interviews, and short answer questionnaires will be used. Persons with MS will be recruited from the different locations. This study seeks to enroll at least 20 patients that meet the criteria from each site for the longitudinal cohort study (total n=60). Results: Ethical approval has been granted in Argentina and is pending in Spain and Switzerland. Outcomes will be published in peer-reviewed medical journals and presented at international conferences. Conclusions: Findings from this study will be used to help understand the role that mHealth can play in fatigue management in MS.

IOS Press eBooks, Jun 6, 2022

Since Covid-19, digital health interventions (DHIs) have been embraced as never before. The pande... more Since Covid-19, digital health interventions (DHIs) have been embraced as never before. The pandemic led to many new challenges, including the patient experience in digital health care delivery. In this literature study, we identified and synthesized factors that impact patient experience in digital health (dPEx), and reviewed the methods and strategies relevant to its design and implementation. We conducted an umbrella review including 15 reviews representing 543 studies. Four themes were identified that describe design-relevant factors that impact dPEx: individual context, content, technical issues, and design features. We propose a preliminary framework to explain the relationship between each factor and support user-centered design efforts. Further research is needed to identify which factors have the most impact.

Annexes 3. Emerging themes results classification with reference to papers included in the review... more Annexes 3. Emerging themes results classification with reference to papers included in the review. Main themes Subthemes Papers where are referenced Theme 1: Attitudinal aspects. Positive attitudes towards technology Latino/Hispanic Alzheimer's caregivers experiencing dementia-related dressing issues: corroboration of the Preservation of Self model and reactions to a ''smart dresser'' computer-based dressing aid. 2016, Mahoney DF. et al. The design of smart homes for people with dementia-User-interface aspects. 2005, Orpwood R. et al. Stages of use: consideration, initiation, utilization, and outcomes of an internetmediated intervention. 2010, Chiu ML. et al. A cognitive prosthesis and communication support for people with dementia. 2004, Alm N. et al. Digital communication support and Alzheimer's disease. 2017, Ekstrom A. et al. Preliminary study on Remote Assistance for People with Dementia at Home by Using Multimedia Contents. 2009, Hamada T. et al. An interactive web tool to facilitate shared decision making in dementia: Design issues perceived by caregivers and patients. 2014, Span M. et al. Electronic tracking for people with dementia: An exploratory study of the ethical issues experienced by carers in making decisions about age. 2014, White EB. et al. Ethical aspects of using GPS for tracking people with dementia: recommendations for practice. 2011, Landau R. et al. Families' and Professional Caregivers' Views of Using Advanced Technology to Track People with Dementia. 2010, Landau R. et al. Ethical considerations in electronic monitoring of the cognitively impaired. 2017, Yang YT. et al. "It gives me a sense of independence"-Findings from Ireland on the use of assistive technology for people with dementia. 2007, Cahill S. et al. Robots to assist daily activities: views of older adults with Alzheimer's disease and their caregivers. 2017, Wang RH. et al. Electronic tracking system and wandering in Alzheimer's disease: a case study. 2009, Fauconau V. et al. Caregivers' requirements for in-home robotic agent for supporting community-living elderly subjects with cognitive impairment. 2009, Fauconau V. et al. Older people with and without dementia participating in the development of an individual plan with digital calendar and message board. 2010, Holthe T. et al. Co-Conception Process of an Innovative Assistive Device to Track and Find Misplaced Everyday Objects for Older Adults with Cognitive Impairment: The TROUVE Project. 2016, Lopes P. et al. The results from a two-year case study of an information and communication technology support system for family caregivers. 2014, Lundberg S. et al. Dementia caregivers' responses to 2 Internetbased intervention programs. 2011, Marziali E. et al. Gerontechnology: Providing a helping hand when caring for cognitively impaired older adults-intermediate results from a controlled study on the satisfaction and acceptance of informal caregivers. 2012, Mitseva A. et al.

Studies in health technology and informatics, May 27, 2021

Introduction: Multiple sclerosis (MS) is one of the world's most common neurologic disorders. Soc... more Introduction: Multiple sclerosis (MS) is one of the world's most common neurologic disorders. Social media have been proposed as a way to maintain and even increase social interaction for people with MS. The objective of this work is to identify and compare the topics on Twitter during the first wave of COVID-19 pandemic. Methods: Data was collected using the Twitter API between 9/2/2019 and 13/5/2020. SentiStrength was used to analyze data with the day that the pandemic was declared used as a turning point. Frequency-inverse document frequency (tf-idf) was used for each unigram and calculated the gains in tf-idf value. A comparative analysis of the relevance of words and categories among the datasets was performed. Results: The original dataset contained over 610k tweets, our final dataset had 147,963 tweets. After the 10th of march some categories gained relevance in positive tweets ("Healthcare professional", "Chronic conditions", "Condition burden"), while in negative tweets "Emotional aspects" became more relevant and "COVID-19" emerged as a new topic. Conclusions: Our work provides insight on how COVID-19 has changed the online discourse of people with MS.

PubMed, Jun 16, 2020

This paper reports a case study on the spontaneous personalization discussions emerged from inter... more This paper reports a case study on the spontaneous personalization discussions emerged from interviews with healthcare professionals when asked about their work practices and the role of information technology (IT) during consultations. We thematically analyzed the personalization elements using an existing personalization framework to provide insights on the service personalization. Our results contribute to the better design of IT solutions that can support health services' personalization.

BACKGROUND The adoption and use of technology has significantly changed healthcare delivery. Pati... more BACKGROUND The adoption and use of technology has significantly changed healthcare delivery. Patient experience has become a significant factor in the whole spectrum of patient-centered healthcare delivery. Digital Health (DH) is a facilitator to further improving and empowering patient experiences. The design of DH is therefore served by insights into barriers and facilitators of digital patient experience (dPEx). OBJECTIVE To systematically review influencing factors and design considerations of patient experiences (PEx) in DH from the literature, and to generate design guidelines for further improving PEx in DH. METHODS We performed an umbrella systematic review following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) methodology. We searched the Scopus, PubMed and Web of Science databases. Two rounds of small random samples (20%) were independently reviewed by two reviewers who evaluated the eligibility of the articles against the selection criteria. Two-round interrater reliability was assessed through the Fleiss-Cohen coefficient (k1=.88, k2=.80). We applied thematic analysis to analyze the extracted data based on a small set of a priori categories. RESULTS The search resulted in 173 records, of which we selected 45 reviews for data analysis. Findings and conclusions showed a great diversity, most studies presented a set of themes (n=19) or descriptive information only (n=16). dPEx-related influencing factors were classified in nine categories: patient capability, patient opportunity, patient motivation, intervention technology, intervention functionality, intervention interaction design, organizational environment, physical environment and social environment. These can have three types of impact: positive, negative or double-edge. We captured four design constructs (personalization, information, navigation and visualization) and three design methods (human/user-centered design, co-design/participatory design, and inclusive design) as design considerations. CONCLUSIONS We propose the following definition for dPEx: “Digital patient experience is the sum of all interactions affected by a patient’s behavioral determinants, framed by digital technologies, and shaped by organizational culture, that influence patient perceptions across the continuum of care channeling digital health”. We produce a design and evaluation framework contains four phases, which are define design, define evaluation, design ideation and design evaluation, to help DH designers or developers think about how best to address dPEx in the whole design process. We also created nine design guidelines that considered the combination of design considerations and influencing factors to guide the design ideation process. Finally, we propose six directions for future dPEx-related research. and influencing factors for guiding the design ideation process.

PubMed, 2016

Increasing lifespans for chronic disease sufferers means a population of young patients who requi... more Increasing lifespans for chronic disease sufferers means a population of young patients who require lifestyle intervention from an early age. For multiple sclerosis (MS) patients, social problems begin with the decline of cognitive skills and their quality of life is affected. In this workshop, organizers will propose participants to work on different gamification design approachs to solve MS patients' engagement problem. Participants will obtain skills that can be extrapolated to other conditions that require patients change to adopt a different behavior. At the end, participants will present their proposed gamification design and discuss and comment each solution, assessing potential unintended outcomes and advantages.

Journal of Medical Internet Research, Oct 5, 2020

The physical and social distancing measures that have been adopted worldwide because of COVID-19 ... more The physical and social distancing measures that have been adopted worldwide because of COVID-19 will probably remain in place for a long time, especially for senior adults, people with chronic conditions, and other at-risk populations. Teleconsultations can be useful in ensuring that patients continue to receive clinical care while reducing physical crowding and avoiding unnecessary exposure of health care staff. Implementation processes that typically take months of planning, budgeting, pilot testing, and education were compressed into days. However, in the urgency to deal with the present crisis, we may be forgetting that the introduction of digital health is not exclusively a technological issue, but part of a complex organizational change problem. This viewpoint offers insight regarding issues that rapidly adopted teleconsultation systems may face in a post-COVID-19 world.

PubMed, Jun 16, 2020

Background and objective: Social media could be valuable tools to support people with multiple sc... more Background and objective: Social media could be valuable tools to support people with multiple sclerosis (MS). There is little evidence on the MS-related topics that are discussed on social media, and the sentiment linked to these topics. The objective of this work is to identify the MS-related main topics discussed on Twitter, and the sentiment linked to them. Methods: Tweets dealing with MS in the English language were extracted. Latent-Dirilecht Allocation (LDA) was used to identify the main topics discussed in these tweets. Iterative inductive process was used to group the tweets into recurrent topics. The sentiment analysis of these tweets was performed using SentiStrength. Results: LDA' identified topics were grouped into 4 categories, tweets dealing with: related chronic conditions; condition burden; disease-modifying drugs; and awareness-raising. Tweets on condition burden and related chronic conditions were the most negative (p<0.001). A significant lower positive sentiment was found for both tweets dealing with disease-modifying drugs, condition burden, and related chronic conditions (p<0.001). Only tweets on awareness-raising were most positive than the average (p<0.001). Discussion: The use of both tools to identify the main discussed topics on social media and to analyse the sentiment of these topics, increases the knowledge of the themes that could represent the bigger burden for persons affected with MS. This knowledge can help to improve support and therapeutic approaches addressed to them.

BACKGROUND Despite the growing number of digital health (DH) applications, timely, cost-effective... more BACKGROUND Despite the growing number of digital health (DH) applications, timely, cost-effective, and robust evaluations have not kept pace. Patient experience (PEx) was reported as one of the challenges facing the health system by the World Health Organization (WHO) in its 2018 classification of digital health initiatives report. To generate evidence of DH and promote the appropriate integration and use of technologies, standard evaluation of PEx in DH is needed. OBJECTIVE In this study, we systematically reviewed the literature on PEx evaluation timing considerations, evaluation indicators, and evaluation approaches in DH and generated an evaluation guide for further measurement of PEx in DH. METHODS We performed an umbrella systematic review following PRISMA, searching Scopus, PubMed, and Web of Science databases. Two rounds of small random sampling (20%) were independently reviewed by two reviewers who evaluated the eligibility of the articles against the selection criteria. Two-round interrater reliability was assessed using the Fleiss-Cohen coefficient (k1=0.88 and k2=0.80). Thematic analysis was then applied to analyze the extracted data based on a set of a priori categories. RESULTS The search yielded 173 records, of which 45 (26%) were eligible for analysis. Our review highlights five typical evaluation objectives which serve five stakeholder groups separately. We identified three evaluation timing considerations and classified them into three categories: intervention maturity stages, timing of the evaluation, and timing of data collection. Information on evaluation indicators of the digital PEx was identified and summarized into 3 categories (intervention outputs, patient outcomes, and healthcare system impact), 9 themes, and 22 subthemes. A set of evaluation theories, common study designs, data collection methods and instruments, and data analysis approaches were captured which can be used or adapted to evaluate the digital PEx. CONCLUSIONS Our findings enabled us to generate an evaluation guide to help digital health interventions (DHI) researchers, designers, developers, and program evaluators to evaluate the digital PEx. Finally, we propose six directions for encouraging further digital PEx evaluation research and practice to address the poor PEx challenge.

The contemporary insurance ecosystem is digitally transforming to meet a myriad of emergent condi... more The contemporary insurance ecosystem is digitally transforming to meet a myriad of emergent conditions pressured by an increase in available data. A paradigm shift necessitates new business models, digital practices, and customer relationships. To begin to understand the attitudes of customers within the digital transformation context, we conducted a large survey of Finnish insurance organization customers (N = 452). The survey gathered customer attitudes towards three factors of digital transformation: Participation in service development, visions and values of the service provider, and health data sharing. The results of the study offer a descriptive statistical snapshot of the attitudes of insurance customers in the Finnish case context relating to these topics; finding a lack of knowledge about the company digital strategy, a low perceived possibility to participate in the creation of services, a high level of trust, and a reluctance to share health data.

Healthcare emphasizes the importance to treat each healthcare user as a unique individual. This p... more Healthcare emphasizes the importance to treat each healthcare user as a unique individual. This paper reports a case study, where we asked healthcare professionals to rationalize their work practices and the role of information technology (IT) once they meet with a healthcare user seeking for help. In the interviews with the healthcare professionals, aspects of personalization elements emerged without being prompted. We analyzed these emerging elements and categorized them thematically to provide insights to the technology-driven field of personalization with a service-level perspective. Our results provide understanding that can be used in the design of IT solutions that can support personalization of services in healthcare.

JMIR serious games, Aug 24, 2018

Background: Chronic conditions are the leading cause of death in the world. Major improvements in... more Background: Chronic conditions are the leading cause of death in the world. Major improvements in acute care and diagnostics have created a tendency toward the chronification of formerly terminal conditions, requiring people with these conditions to learn how to self-manage. Mobile technologies hold promise as self-management tools due to their ubiquity and cost-effectiveness. The delivery of health-related services through mobile technologies (mobile health, mHealth) has grown exponentially in recent years. However, only a fraction of these solutions take into consideration the views of relevant stakeholders such as health care professionals or even patients. The use of behavioral change models (BCMs) has proven important in developing successful health solutions, yet engaging patients remains a challenge. There is a trend in mHealth solutions called gamification that attempts to use game elements to drive user behavior and increase engagement. As it stands, designers of mHealth solutions for behavioral change in chronic conditions have no clear way of deciding what factors are relevant to consider. Objective: The goal of this work is to discover factors for the design of mHealth solutions for chronic patients using negotiations between medical knowledge, BCMs, and gamification. Methods: This study uses an embedded case study research methodology consisting of 4 embedded units: 1) cross-sectional studies of mHealth applications; 2) statistical analysis of gamification presence; 3) focus groups and interviews to relevant stakeholders; and 4) research through design of an mHealth solution. The data obtained was thematically analyzed to create a conceptual model for the design of mHealth solutions. Results: The Model for Motivational Mobile-health Design (3MD) for chronic conditions guides the design of condition-oriented gamified behavioral change mHealth solutions. The main components are (1) condition specific, which describe factors that need to be adjusted and adapted for each particular chronic condition; (2) motivation related, which are factors that address how to influence behaviors in an engaging manner; and (3) technology based, which are factors that are directly connected to the technical capabilities of mobile technologies. The 3MD also provides a series of high-level illustrative design questions for designers to use and consider during the design process. Conclusions: This work addresses a recognized gap in research and practice, and proposes a unique model that could be of use in the generation of new solutions to help chronic patients.

Gerontechnology, Dec 31, 2019

BACKGROUND The use of mobile devices for delivering health-related services (mHealth) has rapidly... more BACKGROUND The use of mobile devices for delivering health-related services (mHealth) has rapidly increased, leading to a demand for summarizing the state of the art and practice through systematic reviews (SRs). However, the SR process is resource-intensive and time-consuming. Generative AI has emerged as a potential solution to automate tedious tasks, and the present study explores the possibility of using such tools to automate SRs and evaluates its scope and limitations. OBJECTIVE In the larger context of developing evidence-based mHealth solutions, the present study explores the possibility of using generative AI tools to automate time-consuming and resource-intensive tasks like SR; and evaluates its scope and limitations. METHODS The study utilizes Design Science Research (DSR) methodology. The solution proposed is to use co-creation with a generative AI, ChatGPT, to produce software code that automates the process for conducting systematic reviews. RESULTS A triggering prompt was generated and assistance from the generative AI was used to guide the steps towards developing, executing, and debugging a Python script. Errors in code were solved through conversational exchange with ChatGPT and a tentative script was created. The code pulled the mHealth solutions from the Google Play Store and searched their descriptions for keywords that hinted towards evidence base. The results were exported to a CSV file which was compared to the initial outputs of other similar SR processes. CONCLUSIONS The present study demonstrates the potential of using generative AI to automate the time-consuming process of conducting systematic reviews of mHealth apps. This approach could be particularly useful for researchers with limited coding skills. However, the study has limitations related to the DSR methodology, subjectivity bias, and the quality of the search results used to train the language model.

BACKGROUND Multiple sclerosis (MS) is a non-curable chronic inflammatory disease of the central n... more BACKGROUND Multiple sclerosis (MS) is a non-curable chronic inflammatory disease of the central nervous system that affects more than 2 million people worldwide. MS-related symptoms impact negatively on the quality of life of persons with MS, who need to be active in the management of their health. mHealth apps could support these patient groups by offering useful tools, providing reliable information, and monitoring symptoms. A previous study from this group identified needs, barriers, and facilitators for the use of mHealth solutions among persons with MS. It is unknown how commercially available health apps meet these needs. OBJECTIVE The main objective of this review was to assess how the features present in MS apps meet the reported needs of persons with MS. METHODS We followed a combination of scoping review methodology and systematic assessment of features and content of mHealth apps. A search strategy was defined for the two most popular app stores (Google Play and Apple App Store) to identify relevant apps. Reviewers independently conducted a screening process to filter apps according to the selection criteria. Interrater reliability was assessed through the Fleiss-Cohen coefficient (k=.885). Data from the included MS apps were extracted and explored according to classification criteria. RESULTS An initial total of 581 potentially relevant apps was found. After removing duplicates and applying inclusion and exclusion criteria, 30 unique apps were included in the study. A similar number of apps was found in both stores. The majority of the apps dealt with disease management and disease and treatment information. Most apps were developed by small and medium-sized enterprises, followed by pharmaceutical companies. Patient education and personal data management were among the most frequently included features in these apps. Energy management and remote monitoring were often not present in MS apps. Very few contained gamification elements. CONCLUSIONS Currently available MS apps fail to meet the needs and demands of persons with MS. There is a need for health professionals, researchers, and industry partners to collaborate in the design of mHealth solutions for persons with MS to increase adoption and engagement.

Springer series in design and innovation, Nov 4, 2023

Background: Multiple sclerosis (MS) is one of the world's most common neurologic disorders, with ... more Background: Multiple sclerosis (MS) is one of the world's most common neurologic disorders, with symptoms such as fatigue, cognitive problems, and issues with mobility. Evidence suggests that physical activity (PA) helps people with MS reduce fatigue and improve quality of life. The use of mobile technologies for health has grown in recent years with little involvement from relevant stakeholders. User-centered design (UCD) is a design philosophy with the goal of creating solutions specific to the needs and tasks of the intended users. UCD involves stakeholders early and often in the design process. In a preliminary study, we assessed the landscape of commercially available MS mobile health (mHealth) apps; to our knowledge, no study has explored what persons with MS and their formal care providers think of mHealth solutions for PA. Objective: The aim of this study was to (1) explore MS-specific needs for MS mHealth solutions for PA, (2) detect perceived obstacles and facilitators for mHealth solutions from persons with MS and health care professionals, and (3) understand the motivational aspects behind adoption of mHealth solutions for MS. Methods: A mixed-methods design study was conducted in Kliniken Valens, Switzerland, a clinic specializing in neurological rehabilitation. We explored persons with MS and health care professionals who work with them separately. The study had a qualitative part comprising focus groups and interviews, and a quantitative part with standardized tools such as satisfaction with life scale and electronic health (eHealth) literacy. Results: A total of 12 persons with relapsing-remitting MS and 12 health care professionals from different backgrounds participated in the study. Participants were well-educated with an even distribution between genders. Themes identified during analysis were MS-related barriers and facilitators, mHealth design considerations, and general motivational aspects. The insights generated were used to create MS personas for design purposes. Desired mHealth features were as follows: (1) activity tracking, (2) incentives for completing tasks and objectives, (3) customizable goal setting, (4) optional sociability, and (5) game-like attitude among others. Potential barriers to mHealth apps adoption were as follows: (1) rough on-boarding experiences, (2) lack of clear use benefits, and (3) disruption of the health care provider-patient relationship. Potential facilitators were identified: (1) endorsements from experts, (2) playfulness, and (3) tailored to specific persons with MS needs. A total of 4 MS personas were developed to provide designers and computer scientists means to help in the creation of future mHealth solutions for MS. Conclusions: mHealth solutions for increasing PA in persons with MS hold promise. Allowing for realistic goal setting and positive feedback, while minimizing usability burdens, seems to be critical for the adoption of such apps. Fatigue management is especially important in this population; more attention should be brought to this area.

Background: Chronic conditions are the leading cause of death in the world. Major improvements in... more Background: Chronic conditions are the leading cause of death in the world. Major improvements in acute care and diagnostics have created a tendency toward the chronification of formerly terminal conditions, requiring people with these conditions to learn how to self-manage. Mobile technologies hold promise as self-management tools due to their ubiquity and cost-effectiveness. The delivery of health-related services through mobile technologies (mobile health, mHealth) has grown exponentially in recent years. However, only a fraction of these solutions take into consideration the views of relevant stakeholders such as health care professionals or even patients. The use of behavioral change models (BCMs) has proven important in developing successful health solutions, yet engaging patients remains a challenge. There is a trend in mHealth solutions called gamification that attempts to use game elements to drive user behavior and increase engagement. As it stands, designers of mHealth solutions for behavioral change in chronic conditions have no clear way of deciding what factors are relevant to consider. Objective: The goal of this work is to discover factors for the design of mHealth solutions for chronic patients using negotiations between medical knowledge, BCMs, and gamification. Methods: This study uses an embedded case study research methodology consisting of 4 embedded units: 1) cross-sectional studies of mHealth applications; 2) statistical analysis of gamification presence; 3) focus groups and interviews to relevant stakeholders; and 4) research through design of an mHealth solution. The data obtained was thematically analyzed to create a conceptual model for the design of mHealth solutions. Results: The Model for Motivational Mobile-health Design (3MD) for chronic conditions guides the design of condition-oriented gamified behavioral change mHealth solutions. The main components are (1) condition specific, which describe factors that need to be adjusted and adapted for each particular chronic condition; (2) motivation related, which are factors that address how to influence behaviors in an engaging manner; and (3) technology based, which are factors that are directly connected to the technical capabilities of mobile technologies. The 3MD also provides a series of high-level illustrative design questions for designers to use and consider during the design process. Conclusions: This work addresses a recognized gap in research and practice, and proposes a unique model that could be of use in the generation of new solutions to help chronic patients.

JMIR Research Protocols, Aug 4, 2020

Background: Multiple sclerosis (MS) is one of the world's most common neurologic disorders leadin... more Background: Multiple sclerosis (MS) is one of the world's most common neurologic disorders leading to severe disability in young adults. MS-related fatigue directly impacts on the quality of life and activity levels of people with MS. Self-management strategies are used to support them in the care of their health. Mobile health (mHealth) solutions can offer tools to help symptom management. Following a user-centered design and evidence-based process, an mHealth solution called More Stamina was created to help persons with MS manage their fatigue. Objective: The overall study aims are to explore the feasibility, acceptability, and usability of More Stamina, a mobile app for fatigue self-management for persons with MS. Methods: A mixed-methods, multicenter study will be used to assess the feasibility, acceptability, and usability of More Stamina. The study will take place during the third and fourth quarters of 2020 (Q3-Q4 2020) in 3 locations: Argentina, Spain, and Switzerland. A longitudinal cohort study will take place, and think-aloud protocols, open-ended interviews, and short answer questionnaires will be used. Persons with MS will be recruited from the different locations. This study seeks to enroll at least 20 patients that meet the criteria from each site for the longitudinal cohort study (total n=60). Results: Ethical approval has been granted in Argentina and is pending in Spain and Switzerland. Outcomes will be published in peer-reviewed medical journals and presented at international conferences. Conclusions: Findings from this study will be used to help understand the role that mHealth can play in fatigue management in MS.

IOS Press eBooks, Jun 6, 2022

Since Covid-19, digital health interventions (DHIs) have been embraced as never before. The pande... more Since Covid-19, digital health interventions (DHIs) have been embraced as never before. The pandemic led to many new challenges, including the patient experience in digital health care delivery. In this literature study, we identified and synthesized factors that impact patient experience in digital health (dPEx), and reviewed the methods and strategies relevant to its design and implementation. We conducted an umbrella review including 15 reviews representing 543 studies. Four themes were identified that describe design-relevant factors that impact dPEx: individual context, content, technical issues, and design features. We propose a preliminary framework to explain the relationship between each factor and support user-centered design efforts. Further research is needed to identify which factors have the most impact.

Annexes 3. Emerging themes results classification with reference to papers included in the review... more Annexes 3. Emerging themes results classification with reference to papers included in the review. Main themes Subthemes Papers where are referenced Theme 1: Attitudinal aspects. Positive attitudes towards technology Latino/Hispanic Alzheimer's caregivers experiencing dementia-related dressing issues: corroboration of the Preservation of Self model and reactions to a ''smart dresser'' computer-based dressing aid. 2016, Mahoney DF. et al. The design of smart homes for people with dementia-User-interface aspects. 2005, Orpwood R. et al. Stages of use: consideration, initiation, utilization, and outcomes of an internetmediated intervention. 2010, Chiu ML. et al. A cognitive prosthesis and communication support for people with dementia. 2004, Alm N. et al. Digital communication support and Alzheimer's disease. 2017, Ekstrom A. et al. Preliminary study on Remote Assistance for People with Dementia at Home by Using Multimedia Contents. 2009, Hamada T. et al. An interactive web tool to facilitate shared decision making in dementia: Design issues perceived by caregivers and patients. 2014, Span M. et al. Electronic tracking for people with dementia: An exploratory study of the ethical issues experienced by carers in making decisions about age. 2014, White EB. et al. Ethical aspects of using GPS for tracking people with dementia: recommendations for practice. 2011, Landau R. et al. Families' and Professional Caregivers' Views of Using Advanced Technology to Track People with Dementia. 2010, Landau R. et al. Ethical considerations in electronic monitoring of the cognitively impaired. 2017, Yang YT. et al. "It gives me a sense of independence"-Findings from Ireland on the use of assistive technology for people with dementia. 2007, Cahill S. et al. Robots to assist daily activities: views of older adults with Alzheimer's disease and their caregivers. 2017, Wang RH. et al. Electronic tracking system and wandering in Alzheimer's disease: a case study. 2009, Fauconau V. et al. Caregivers' requirements for in-home robotic agent for supporting community-living elderly subjects with cognitive impairment. 2009, Fauconau V. et al. Older people with and without dementia participating in the development of an individual plan with digital calendar and message board. 2010, Holthe T. et al. Co-Conception Process of an Innovative Assistive Device to Track and Find Misplaced Everyday Objects for Older Adults with Cognitive Impairment: The TROUVE Project. 2016, Lopes P. et al. The results from a two-year case study of an information and communication technology support system for family caregivers. 2014, Lundberg S. et al. Dementia caregivers' responses to 2 Internetbased intervention programs. 2011, Marziali E. et al. Gerontechnology: Providing a helping hand when caring for cognitively impaired older adults-intermediate results from a controlled study on the satisfaction and acceptance of informal caregivers. 2012, Mitseva A. et al.

Studies in health technology and informatics, May 27, 2021

Introduction: Multiple sclerosis (MS) is one of the world's most common neurologic disorders. Soc... more Introduction: Multiple sclerosis (MS) is one of the world's most common neurologic disorders. Social media have been proposed as a way to maintain and even increase social interaction for people with MS. The objective of this work is to identify and compare the topics on Twitter during the first wave of COVID-19 pandemic. Methods: Data was collected using the Twitter API between 9/2/2019 and 13/5/2020. SentiStrength was used to analyze data with the day that the pandemic was declared used as a turning point. Frequency-inverse document frequency (tf-idf) was used for each unigram and calculated the gains in tf-idf value. A comparative analysis of the relevance of words and categories among the datasets was performed. Results: The original dataset contained over 610k tweets, our final dataset had 147,963 tweets. After the 10th of march some categories gained relevance in positive tweets ("Healthcare professional", "Chronic conditions", "Condition burden"), while in negative tweets "Emotional aspects" became more relevant and "COVID-19" emerged as a new topic. Conclusions: Our work provides insight on how COVID-19 has changed the online discourse of people with MS.

PubMed, Jun 16, 2020

This paper reports a case study on the spontaneous personalization discussions emerged from inter... more This paper reports a case study on the spontaneous personalization discussions emerged from interviews with healthcare professionals when asked about their work practices and the role of information technology (IT) during consultations. We thematically analyzed the personalization elements using an existing personalization framework to provide insights on the service personalization. Our results contribute to the better design of IT solutions that can support health services' personalization.

BACKGROUND The adoption and use of technology has significantly changed healthcare delivery. Pati... more BACKGROUND The adoption and use of technology has significantly changed healthcare delivery. Patient experience has become a significant factor in the whole spectrum of patient-centered healthcare delivery. Digital Health (DH) is a facilitator to further improving and empowering patient experiences. The design of DH is therefore served by insights into barriers and facilitators of digital patient experience (dPEx). OBJECTIVE To systematically review influencing factors and design considerations of patient experiences (PEx) in DH from the literature, and to generate design guidelines for further improving PEx in DH. METHODS We performed an umbrella systematic review following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) methodology. We searched the Scopus, PubMed and Web of Science databases. Two rounds of small random samples (20%) were independently reviewed by two reviewers who evaluated the eligibility of the articles against the selection criteria. Two-round interrater reliability was assessed through the Fleiss-Cohen coefficient (k1=.88, k2=.80). We applied thematic analysis to analyze the extracted data based on a small set of a priori categories. RESULTS The search resulted in 173 records, of which we selected 45 reviews for data analysis. Findings and conclusions showed a great diversity, most studies presented a set of themes (n=19) or descriptive information only (n=16). dPEx-related influencing factors were classified in nine categories: patient capability, patient opportunity, patient motivation, intervention technology, intervention functionality, intervention interaction design, organizational environment, physical environment and social environment. These can have three types of impact: positive, negative or double-edge. We captured four design constructs (personalization, information, navigation and visualization) and three design methods (human/user-centered design, co-design/participatory design, and inclusive design) as design considerations. CONCLUSIONS We propose the following definition for dPEx: “Digital patient experience is the sum of all interactions affected by a patient’s behavioral determinants, framed by digital technologies, and shaped by organizational culture, that influence patient perceptions across the continuum of care channeling digital health”. We produce a design and evaluation framework contains four phases, which are define design, define evaluation, design ideation and design evaluation, to help DH designers or developers think about how best to address dPEx in the whole design process. We also created nine design guidelines that considered the combination of design considerations and influencing factors to guide the design ideation process. Finally, we propose six directions for future dPEx-related research. and influencing factors for guiding the design ideation process.

PubMed, 2016

Increasing lifespans for chronic disease sufferers means a population of young patients who requi... more Increasing lifespans for chronic disease sufferers means a population of young patients who require lifestyle intervention from an early age. For multiple sclerosis (MS) patients, social problems begin with the decline of cognitive skills and their quality of life is affected. In this workshop, organizers will propose participants to work on different gamification design approachs to solve MS patients' engagement problem. Participants will obtain skills that can be extrapolated to other conditions that require patients change to adopt a different behavior. At the end, participants will present their proposed gamification design and discuss and comment each solution, assessing potential unintended outcomes and advantages.

Journal of Medical Internet Research, Oct 5, 2020

The physical and social distancing measures that have been adopted worldwide because of COVID-19 ... more The physical and social distancing measures that have been adopted worldwide because of COVID-19 will probably remain in place for a long time, especially for senior adults, people with chronic conditions, and other at-risk populations. Teleconsultations can be useful in ensuring that patients continue to receive clinical care while reducing physical crowding and avoiding unnecessary exposure of health care staff. Implementation processes that typically take months of planning, budgeting, pilot testing, and education were compressed into days. However, in the urgency to deal with the present crisis, we may be forgetting that the introduction of digital health is not exclusively a technological issue, but part of a complex organizational change problem. This viewpoint offers insight regarding issues that rapidly adopted teleconsultation systems may face in a post-COVID-19 world.

PubMed, Jun 16, 2020

Background and objective: Social media could be valuable tools to support people with multiple sc... more Background and objective: Social media could be valuable tools to support people with multiple sclerosis (MS). There is little evidence on the MS-related topics that are discussed on social media, and the sentiment linked to these topics. The objective of this work is to identify the MS-related main topics discussed on Twitter, and the sentiment linked to them. Methods: Tweets dealing with MS in the English language were extracted. Latent-Dirilecht Allocation (LDA) was used to identify the main topics discussed in these tweets. Iterative inductive process was used to group the tweets into recurrent topics. The sentiment analysis of these tweets was performed using SentiStrength. Results: LDA' identified topics were grouped into 4 categories, tweets dealing with: related chronic conditions; condition burden; disease-modifying drugs; and awareness-raising. Tweets on condition burden and related chronic conditions were the most negative (p<0.001). A significant lower positive sentiment was found for both tweets dealing with disease-modifying drugs, condition burden, and related chronic conditions (p<0.001). Only tweets on awareness-raising were most positive than the average (p<0.001). Discussion: The use of both tools to identify the main discussed topics on social media and to analyse the sentiment of these topics, increases the knowledge of the themes that could represent the bigger burden for persons affected with MS. This knowledge can help to improve support and therapeutic approaches addressed to them.

BACKGROUND Despite the growing number of digital health (DH) applications, timely, cost-effective... more BACKGROUND Despite the growing number of digital health (DH) applications, timely, cost-effective, and robust evaluations have not kept pace. Patient experience (PEx) was reported as one of the challenges facing the health system by the World Health Organization (WHO) in its 2018 classification of digital health initiatives report. To generate evidence of DH and promote the appropriate integration and use of technologies, standard evaluation of PEx in DH is needed. OBJECTIVE In this study, we systematically reviewed the literature on PEx evaluation timing considerations, evaluation indicators, and evaluation approaches in DH and generated an evaluation guide for further measurement of PEx in DH. METHODS We performed an umbrella systematic review following PRISMA, searching Scopus, PubMed, and Web of Science databases. Two rounds of small random sampling (20%) were independently reviewed by two reviewers who evaluated the eligibility of the articles against the selection criteria. Two-round interrater reliability was assessed using the Fleiss-Cohen coefficient (k1=0.88 and k2=0.80). Thematic analysis was then applied to analyze the extracted data based on a set of a priori categories. RESULTS The search yielded 173 records, of which 45 (26%) were eligible for analysis. Our review highlights five typical evaluation objectives which serve five stakeholder groups separately. We identified three evaluation timing considerations and classified them into three categories: intervention maturity stages, timing of the evaluation, and timing of data collection. Information on evaluation indicators of the digital PEx was identified and summarized into 3 categories (intervention outputs, patient outcomes, and healthcare system impact), 9 themes, and 22 subthemes. A set of evaluation theories, common study designs, data collection methods and instruments, and data analysis approaches were captured which can be used or adapted to evaluate the digital PEx. CONCLUSIONS Our findings enabled us to generate an evaluation guide to help digital health interventions (DHI) researchers, designers, developers, and program evaluators to evaluate the digital PEx. Finally, we propose six directions for encouraging further digital PEx evaluation research and practice to address the poor PEx challenge.

The contemporary insurance ecosystem is digitally transforming to meet a myriad of emergent condi... more The contemporary insurance ecosystem is digitally transforming to meet a myriad of emergent conditions pressured by an increase in available data. A paradigm shift necessitates new business models, digital practices, and customer relationships. To begin to understand the attitudes of customers within the digital transformation context, we conducted a large survey of Finnish insurance organization customers (N = 452). The survey gathered customer attitudes towards three factors of digital transformation: Participation in service development, visions and values of the service provider, and health data sharing. The results of the study offer a descriptive statistical snapshot of the attitudes of insurance customers in the Finnish case context relating to these topics; finding a lack of knowledge about the company digital strategy, a low perceived possibility to participate in the creation of services, a high level of trust, and a reluctance to share health data.

Healthcare emphasizes the importance to treat each healthcare user as a unique individual. This p... more Healthcare emphasizes the importance to treat each healthcare user as a unique individual. This paper reports a case study, where we asked healthcare professionals to rationalize their work practices and the role of information technology (IT) once they meet with a healthcare user seeking for help. In the interviews with the healthcare professionals, aspects of personalization elements emerged without being prompted. We analyzed these emerging elements and categorized them thematically to provide insights to the technology-driven field of personalization with a service-level perspective. Our results provide understanding that can be used in the design of IT solutions that can support personalization of services in healthcare.

JMIR serious games, Aug 24, 2018

Background: Chronic conditions are the leading cause of death in the world. Major improvements in... more Background: Chronic conditions are the leading cause of death in the world. Major improvements in acute care and diagnostics have created a tendency toward the chronification of formerly terminal conditions, requiring people with these conditions to learn how to self-manage. Mobile technologies hold promise as self-management tools due to their ubiquity and cost-effectiveness. The delivery of health-related services through mobile technologies (mobile health, mHealth) has grown exponentially in recent years. However, only a fraction of these solutions take into consideration the views of relevant stakeholders such as health care professionals or even patients. The use of behavioral change models (BCMs) has proven important in developing successful health solutions, yet engaging patients remains a challenge. There is a trend in mHealth solutions called gamification that attempts to use game elements to drive user behavior and increase engagement. As it stands, designers of mHealth solutions for behavioral change in chronic conditions have no clear way of deciding what factors are relevant to consider. Objective: The goal of this work is to discover factors for the design of mHealth solutions for chronic patients using negotiations between medical knowledge, BCMs, and gamification. Methods: This study uses an embedded case study research methodology consisting of 4 embedded units: 1) cross-sectional studies of mHealth applications; 2) statistical analysis of gamification presence; 3) focus groups and interviews to relevant stakeholders; and 4) research through design of an mHealth solution. The data obtained was thematically analyzed to create a conceptual model for the design of mHealth solutions. Results: The Model for Motivational Mobile-health Design (3MD) for chronic conditions guides the design of condition-oriented gamified behavioral change mHealth solutions. The main components are (1) condition specific, which describe factors that need to be adjusted and adapted for each particular chronic condition; (2) motivation related, which are factors that address how to influence behaviors in an engaging manner; and (3) technology based, which are factors that are directly connected to the technical capabilities of mobile technologies. The 3MD also provides a series of high-level illustrative design questions for designers to use and consider during the design process. Conclusions: This work addresses a recognized gap in research and practice, and proposes a unique model that could be of use in the generation of new solutions to help chronic patients.

Gerontechnology, Dec 31, 2019

BACKGROUND The use of mobile devices for delivering health-related services (mHealth) has rapidly... more BACKGROUND The use of mobile devices for delivering health-related services (mHealth) has rapidly increased, leading to a demand for summarizing the state of the art and practice through systematic reviews (SRs). However, the SR process is resource-intensive and time-consuming. Generative AI has emerged as a potential solution to automate tedious tasks, and the present study explores the possibility of using such tools to automate SRs and evaluates its scope and limitations. OBJECTIVE In the larger context of developing evidence-based mHealth solutions, the present study explores the possibility of using generative AI tools to automate time-consuming and resource-intensive tasks like SR; and evaluates its scope and limitations. METHODS The study utilizes Design Science Research (DSR) methodology. The solution proposed is to use co-creation with a generative AI, ChatGPT, to produce software code that automates the process for conducting systematic reviews. RESULTS A triggering prompt was generated and assistance from the generative AI was used to guide the steps towards developing, executing, and debugging a Python script. Errors in code were solved through conversational exchange with ChatGPT and a tentative script was created. The code pulled the mHealth solutions from the Google Play Store and searched their descriptions for keywords that hinted towards evidence base. The results were exported to a CSV file which was compared to the initial outputs of other similar SR processes. CONCLUSIONS The present study demonstrates the potential of using generative AI to automate the time-consuming process of conducting systematic reviews of mHealth apps. This approach could be particularly useful for researchers with limited coding skills. However, the study has limitations related to the DSR methodology, subjectivity bias, and the quality of the search results used to train the language model.

BACKGROUND Multiple sclerosis (MS) is a non-curable chronic inflammatory disease of the central n... more BACKGROUND Multiple sclerosis (MS) is a non-curable chronic inflammatory disease of the central nervous system that affects more than 2 million people worldwide. MS-related symptoms impact negatively on the quality of life of persons with MS, who need to be active in the management of their health. mHealth apps could support these patient groups by offering useful tools, providing reliable information, and monitoring symptoms. A previous study from this group identified needs, barriers, and facilitators for the use of mHealth solutions among persons with MS. It is unknown how commercially available health apps meet these needs. OBJECTIVE The main objective of this review was to assess how the features present in MS apps meet the reported needs of persons with MS. METHODS We followed a combination of scoping review methodology and systematic assessment of features and content of mHealth apps. A search strategy was defined for the two most popular app stores (Google Play and Apple App Store) to identify relevant apps. Reviewers independently conducted a screening process to filter apps according to the selection criteria. Interrater reliability was assessed through the Fleiss-Cohen coefficient (k=.885). Data from the included MS apps were extracted and explored according to classification criteria. RESULTS An initial total of 581 potentially relevant apps was found. After removing duplicates and applying inclusion and exclusion criteria, 30 unique apps were included in the study. A similar number of apps was found in both stores. The majority of the apps dealt with disease management and disease and treatment information. Most apps were developed by small and medium-sized enterprises, followed by pharmaceutical companies. Patient education and personal data management were among the most frequently included features in these apps. Energy management and remote monitoring were often not present in MS apps. Very few contained gamification elements. CONCLUSIONS Currently available MS apps fail to meet the needs and demands of persons with MS. There is a need for health professionals, researchers, and industry partners to collaborate in the design of mHealth solutions for persons with MS to increase adoption and engagement.