A learning health systems approach to integrating electronic patient-reported outcomes across the health care organization

Introduction: Foundational to a learning health system (LHS) is the presence of a data infrastructure that can support continuous learning and improve patient outcomes. To advance their capacity to drive patient-centered care, health systems are increasingly looking to expand the electronic capture of patient data, such as electronic patient-reported outcome (ePRO) measures. Yet ePROs bring unique considerations around workflow, measurement, and technology that health systems may not be poised to navigate. We report on our effort to develop generalizable learnings that can support the integration of ePROs into clinical practice within an LHS framework. Methods: Guided by action research methodology, we engaged in iterative cycles of planning, acting, observing, and reflecting around ePRO use with two primary goals: (1) mobilize an ePRO community of practice to facilitate knowledge sharing, and (2) establish guidelines for ePRO use in the context of LHS practice. Multiple, emergent data collection activities generated generalizable guidelines that document the tangible best practices for ePRO use in clinical care. We organized guidelines around thematic areas that reflect LHS structures and stakeholders. Results: Three core thematic areas (and 24 guidelines) emerged. The theme of governance reflects the importance of leadership, knowledge management, and facilitating organizational learning around best practice models for ePRO use. The theme of integration considers the intersection of workflow, technology, and human factors for ePROs across areas of care delivery. Lastly, the theme of reporting reflects critical considerations for curating data and information, designing system functions and interactions, and presentation of ePRO data to support the translation of knowledge to action. Conclusions: The guidelines produced from this work highlight the complex, multidisciplinary nature of implementing change within LHS contexts, and the value of action research approaches to enable rapid, iterative learning that leverages the knowledge and experience of communities of practice

Design Implications for design of mind-body technology for adolescent sleep.

Thesis (Ph.D.)--University of Washington, 2023Sleep problems are common in adolescents and impact many aspects of young people. Pervasive media use, particularly in the evening, is a major reason for sleep problems in adolescents. Current approaches to reducing media use in adolescents with sleep problems have been met with many challenges. A “harm reduction model” based intervention to reduce the adverse consequences of media use (i.e., arousal from media use) without trying to eliminate media use can be feasible and helpful. Yet, very few studies have used the harm reduction model to target media use in adolescents. Mind-body approaches that improve self-awareness and self-regulation offer an alternative harm reduction-based approach to reduce media-induced arousal that could be more acceptable to families but has not been explored for media use among adolescents. Mind-body approaches have been shown to help adolescents in the treatment or self-management of various conditions including insomnia, and sleep disturbance. Existing mind-body approaches for adolescents have been delivered in person or at schools but are not readily accessible due to high cost and high dropout rates. There have been increasing calls to deliver mind-body approaches digitally to adolescents making them more accessible and scalable. Even though there is an increasing focus on mind-body technology most of the existing literature has focused on the adult population. There is very little work involving adolescents in the design of mind-body technology. Because of the lack of work involving adolescents in the design of mind-body technology, this important primary user group is often left to use mind-body technology that is not designed considering their preferences and needs. Engaging adolescents in the development of technology for mind-body approaches can help inform design of tools that meet their needs. In this dissertation, guided by Human-Centered Design (HCD) as a methodological framework that emphasizes the participation of technology users in the design process, I describe adolescent and parent perspectives on adolescent bedtime media use and parental mediation strategies of adolescent bedtime media use (Aim 1). I examine adolescents’ and parents’ interests in the use of mind-body approaches to mitigate the effects of media use on sleep (Aim 2). I then formulate design implications for digital mind-body technology through co-design workshops with adolescents (Aim 3). Results from these studies can inform the design of informatics solutions that have the potential to mitigate sleep problems in adolescents. Implications that future researchers, designers, and practitioners should consider when creating new mind-body technology for adolescents include providing a variety of content with the ability to customize and personalize, including functionalities that engage adolescents like games and rewards while avoiding distractions, allow for granular sharing controls, provide intelligent content while maintaining privacy and trust, offer multiple modalities for interaction with technology and consider the context of adolescent and their families. Findings provide a foundation for designing digital mind-body tools for adolescent sleep

Design Guidelines for a Technology-Enabled Nutrition Education Program to Support Overweight and Obese Adolescents: Qualitative User-Centered Design Study

Background: Childhood overweight and obesity are major health challenges in the United States. One of the recommendations to combat obesity is to maintain a healthy diet, which is often best supported by eating home-cooked meals to control cooking methods, ingredients, and portions. Diet control through home cooking is challenged because of the decline in culinary skills in the population and a paucity of effective culinary nutrition education (CNE) programs. Providing technology-enabled CNE (CNE-tech) to overweight and obese adolescents can equip them with life skills that can assist them in the future. Such skills can facilitate saving money, eating healthier, and creating social environments. In addition, CNE builds cooking confidence and food literacy that in turn can build adolescent self-efficacy, particularly toward managing their health behaviors. Objective: This study aimed to inform functionalities, design requirements, and the context of use for CNE-tech that could enhance overweight and obese adolescents’ healthy food literacy, cooking confidence, and general self-efficacy with regard to self-management to ultimately promote healthy lifestyle management. Methods: The design science study was completed in 2 distinct phases engaging overweight and obese adolescents, parents of overweight and obese adolescents, and the health care providers that treat adolescents with these conditions. Phase 2, our primary source of data, involved user-centered design methods including the following: (1) early stage prototype usability analysis, (2) semistructured interviews with 70 overweight or obese adolescents engaged in a healthy behavior program, and (3) semistructured interviews with 10 health care providers. Data were analyzed using constant comparison analysis to identify functionalities, design requirements, and inform the context of use of CNE-tech. Results: Data revealed specific desired functionalities for the CNE-tech related to building cooking skills, populating a healthy recipe database, suggesting healthy alternatives, supporting the construction of a healthy plate, and the ability to share healthy recipes and cooking accomplishments. Moreover, the adolescents provided design requirements pertaining to the presentation (eg, vivid colors, semirealistic images, and cooking sounds), use of multimedia, and gaming. Data further revealed contextual factors, such as shared experiences with family members and enhanced continued use. Conclusions: We demonstrate the potentiality of creating CNE-tech that could effectively lead to better self-care and induce sustainable behavioral change as it facilitates skill building, self-efficacy, and a pathway that enables overweight and obese adolescents to influence cooking habits in their family home and future dwellings. Our CNE-tech–proposed solution aligns with the goals of overweight and obese adolescents and also reflects existing theories about behavioral change