(1) Priorities-Aligned Care for Patients with Multiple Chronic Conditions
Ryu, H., Berry, A., Lim, C., Hartzler, A., Hirsch, T., Trejo, J., Bermet, Z., Crawford-Gallagher, B., Tran, V., Ferguson, D., Cronkite, D., Brooks, T., Weeks, J., and Ralston, J. "“You Can See the Connections”: Facilitating Visualization of Care Priorities in People Living with Multiple Chronic Health Conditions", CHI 2023. https://doi.org/10.1145/3544548.3580908
*Won Honorable Mention Award at CHI 2023: https://programs.sigchi.org/chi/2023/program/content/96086
Individuals with multiple chronic health conditions(MCC) often face an overwhelming set of self-management work, resulting in a need to set care priorities. Yet, much of this self-management work is invisible to healthcare providers. This study aimed to support the development and sharing of connections between personal values and self-management tasks for individuals with MCC through the facilitated use of an interactive visualization system: Conversation Canvas. We conducted a field study with 13 participants with MCC, 3 caregivers, and their 7 primary care providers. Analysis of interviews with MCC participants showed that developing visualizations of the connections between personal values, self-management tasks, and health conditions helped individuals make sense of connections relevant to their health and wellbeing, recognize a road map of central issues and their impacts, feel respected and understood, share priorities with providers, and support value-aligned changes. These findings demonstrated the potential for interactive visualization to support priorities-aligned care.
(2) Kids CoLab! Project: Collaborative Decision-Making for Adolescents with Kidney Disease
Ryu, H., Xu, Z., Ng, C., Pruette, C. S., Wightman, A., Pratt, W., Snyder, J., Hutson, R., Pollack, A. "Collaborative Decision-Making in Youth with Chronic Kidney Disease [Abstract]", 2024 Pediatric Academic Societies Meeting.
The aim of this project is to (1) characterize the current state of collaborative decision-making (CDM) in terms of its prevalence, quality, and satisfaction, and (2) define the desired future state which will facilitate Chronic Kidney Disease (CKD) youths’ engagement in CDM. Utilizing a mixed method approach leveraging direct observations, interviews, and surveys with key stakeholders we plan to (1) assess the unique needs, opportunities, and desires of youth to engage in CDM across the spectrum of decisions and phases (i.e. pre-dialysis, dialysis, & transplant) faced by CKD youth and their families impacted by CKD, (2) identify existing barriers and facilitators to CDM, and finally, (3) describe the prevalence of CDM involving CKD youth. Comparing the current and desired state of CDM with CKD youth will yield a detailed list of opportunities to facilitate the development of a novel CDM tool, designed to foster and support CDM and CDM skills with CKD youth.