Jiwon Jung
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9 records found
1
Navigating the future of mobility user experience
Eliciting user values
Introduction: Mental health issues among young people have surged post-COVID-19. Mental health apps can offer accessible preventive support on a large scale, yet the perspective of minoritized youth–such as those from low socioeconomic and ethnic/racial backgrounds–are underexplored. This risks low uptake and effectiveness, and exacerbating health inequities. This study aimed to understand the needs and concerns of minoritized youth in the Netherlands using a participatory approach. Methods: We conducted 3 co-creation sessions with 17 adolescents (16 females, majority Dutch Moroccan background) aged 11–22 years, recruited through community centers in lower-income neighborhoods in The Netherlands, with the help of community workers. We also organized a discussion session with 26 preventive youth workers to explore their perspectives regarding implementation. A subset of youth (n = 10) analyzed the data in 2 co-thematic analysis workshops. We compared youth and researcher themes. Results: Youth saw data-driven mental health apps as useful for short-term stress relief through motivational quotes, social activity suggestions, and homework support, but unable to solve more severe issues. In the co-analysis, youth analyzed based on emotion and functions, whereas researchers employed a more technical lens. Key themes included identity-based (such as religion, gender, and age) and contextual tailoring (to school/home schedules), compassionate communication as opposed to fake support (robots), safety, and the role of social media. Conclusion: These findings highlight the need to examine how app design for young people can prioritize authentic, compassionate communication, safety–including transparency about data–tailoring to identify aspects, adapting the timing and frequency of notifications, and integrating social connections and social media. Participatory approaches are promising to better understand the needs of youth from minoritized backgrounds for digital mental health technologies, with the aim of equitable digital solutions.
Understanding patients’ everyday experience is essential to improve patient centered care in sarcoidosis. So far, patient perspectives are based on survey- and qualitative research.
Aim
We aimed to assess patient-driven perspectives on their care trajectories using a novel machine learning-driven approach (MLD).
Methods
We used the largest Dutch sarcoidosis patient platform as the data source of patient stories. The patients’ stories were extracted with permission. We applied topic modelling (to generate topics among the posts), and sentiment analysis (to find tone of voice in the topics). To validate the findings, we read the top 50 most relevant posts of each topic. An in-depth patients’ disease trajectory map was made.
Results
Based on 4969 forum posts, 30 final topics and 10 upper themes were generated, which formed the basis for the “patient journey-map” which shows patients’ perspective across the care pathway. Important decision moments could be identified, as well as care “tracks” at home and hospital and topics associated with positive or negative emotions. Most patients’ perspectives were about symptoms (mainly negative sentiment), disease-modifying medication (mainly neutral sentiment), and quality of life (negative, neutral and positive).
Discussion
A major part of living with sarcoidosis takes place outside the view of the hospital, but this part often remains invisible. MLD is an innovative approach, providing a comprehensive overview of patients’ perspectives on health and care. Integrating, these findings in the design of health care delivery has the potential to improve patient-centered care. ...
Understanding patients’ everyday experience is essential to improve patient centered care in sarcoidosis. So far, patient perspectives are based on survey- and qualitative research.
Aim
We aimed to assess patient-driven perspectives on their care trajectories using a novel machine learning-driven approach (MLD).
Methods
We used the largest Dutch sarcoidosis patient platform as the data source of patient stories. The patients’ stories were extracted with permission. We applied topic modelling (to generate topics among the posts), and sentiment analysis (to find tone of voice in the topics). To validate the findings, we read the top 50 most relevant posts of each topic. An in-depth patients’ disease trajectory map was made.
Results
Based on 4969 forum posts, 30 final topics and 10 upper themes were generated, which formed the basis for the “patient journey-map” which shows patients’ perspective across the care pathway. Important decision moments could be identified, as well as care “tracks” at home and hospital and topics associated with positive or negative emotions. Most patients’ perspectives were about symptoms (mainly negative sentiment), disease-modifying medication (mainly neutral sentiment), and quality of life (negative, neutral and positive).
Discussion
A major part of living with sarcoidosis takes place outside the view of the hospital, but this part often remains invisible. MLD is an innovative approach, providing a comprehensive overview of patients’ perspectives on health and care. Integrating, these findings in the design of health care delivery has the potential to improve patient-centered care.
The rising number of cancer survivors and the shortage of health care professionals challenge the accessibility of cancer care. Health technologies are necessary for sustaining optimal patient journeys. To understand individuals’ daily lives during their patient journey, qualitative studies are crucial. However, not all patients wish to share their stories with researchers.
Objective:
This study aims to identify and assess patient experiences on a large scale using a novel machine learning–supported approach, leveraging data from patient forums.
Methods:
Forum posts of patients with colorectal cancer (CRC) from the Cancer Survivors Network USA were used as the data source. Topic modeling, as a part of machine learning, was used to recognize the topic patterns in the posts. Researchers read the most relevant 50 posts on each topic, dividing them into “home” or “hospital” contexts. A patient community journey map, derived from patients stories, was developed to visually illustrate our findings. CRC medical doctors and a quality-of-life expert evaluated the identified topics of patient experience and the map.
Results:
Based on 212,107 posts, 37 topics and 10 upper clusters were produced. Dominant clusters included “Daily activities while living with CRC” (38,782, 18.3%) and “Understanding treatment including alternatives and adjuvant therapy” (31,577, 14.9%). Topics related to the home context had more emotional content compared with the hospital context. The patient community journey map was constructed based on these findings.
Conclusions:
Our study highlighted the diverse concerns and experiences of patients with CRC. The more emotional content in home context discussions underscores the personal impact of CRC beyond clinical settings. Based on our study, we found that a machine learning-supported approach is a promising solution to analyze patients’ experiences. The innovative application of patient community journey mapping provides a unique perspective into the challenges in patients’ daily lives, which is essential for delivering appropriate support at the right moment. ...
The rising number of cancer survivors and the shortage of health care professionals challenge the accessibility of cancer care. Health technologies are necessary for sustaining optimal patient journeys. To understand individuals’ daily lives during their patient journey, qualitative studies are crucial. However, not all patients wish to share their stories with researchers.
Objective:
This study aims to identify and assess patient experiences on a large scale using a novel machine learning–supported approach, leveraging data from patient forums.
Methods:
Forum posts of patients with colorectal cancer (CRC) from the Cancer Survivors Network USA were used as the data source. Topic modeling, as a part of machine learning, was used to recognize the topic patterns in the posts. Researchers read the most relevant 50 posts on each topic, dividing them into “home” or “hospital” contexts. A patient community journey map, derived from patients stories, was developed to visually illustrate our findings. CRC medical doctors and a quality-of-life expert evaluated the identified topics of patient experience and the map.
Results:
Based on 212,107 posts, 37 topics and 10 upper clusters were produced. Dominant clusters included “Daily activities while living with CRC” (38,782, 18.3%) and “Understanding treatment including alternatives and adjuvant therapy” (31,577, 14.9%). Topics related to the home context had more emotional content compared with the hospital context. The patient community journey map was constructed based on these findings.
Conclusions:
Our study highlighted the diverse concerns and experiences of patients with CRC. The more emotional content in home context discussions underscores the personal impact of CRC beyond clinical settings. Based on our study, we found that a machine learning-supported approach is a promising solution to analyze patients’ experiences. The innovative application of patient community journey mapping provides a unique perspective into the challenges in patients’ daily lives, which is essential for delivering appropriate support at the right moment.
“It Is a Moving Process”
Understanding the Evolution of Explainability Needs of Clinicians in Pulmonary Medicine
Advancing Design Approaches through Data-Driven Techniques
Patient Community Journey Mapping Using Online Stories and Machine Learning
In this study, we envision engineering design activities for collective computing, an upcoming era of complex systems of massive social interaction through a wide variety of connected computing devices. A literature review reveals how collective computing, compared to the previous eras of personal and ubiquitous computing, may lead to new design tasks and design processes, as well as new roles for designers. Based on this review, new design activities for the collective computing era are envisioned, and further revised in an interview study with 24 informants. The result is a vision for design in the collective computing era, with actionable guidance for designers in terms of a coherent set of new design activities proposed in relation to advances in computing.
Reviewing Design Movement Towards the Collective Computing Era
How will Future Design Activities Differ from Those in Current and Past Eras of Modern Computing?