We are interested in how electronic health records can support patient-centered care across the patient's lifetime, spanning multiple care settings and family situations. Adolescence is a particularly complicated time during which pediatric patients are approaching autonomy—both developmentally and legally—and federal policy, state laws, and community norms are inconsistent regarding adolescent health care and privacy.
We have engaged medical centers across the U.S. in a multi-phase study investigating how each organization manages adolescent and parental proxy access to electronic health record systems, and how Health IT systems can better support both the privacy and care management needs of adolescent patients.
Variability in Adolescent Portal Privacy Features: How the Unique Privacy Needs of the Adolescent Patient Create a Complex Decision-Making Process
Marianne Sharko, Lauren Wilcox, Matthew K. Hong, Jessica Ancker. J Am Med Inform Assoc (JAMIA) 2018. https://doi.org/10.1093/jamia/ocy042
Should Parents See Their Teen’s Medical Record? Asking about the Effect on Adolescent–Doctor Communication Changes Attitudes
Jessica Ancker, Marianne Sharko, Matthew K. Hong, Hannah Mitchell, Lauren Wilcox. J Am Med Inform Assoc (JAMIA) 2018. https://doi.org/10.1093/jamia/ocy120
We previously investigated how
Adolescent and Caregiver Use of a Tethered Personal Health Record System. Matthew Hong, Lauren Wilcox, Clayton Feustel, Karen Wasilewski-Masker, Thomas Olson, Stephen Simoneaux. Proc. American Medical Informatics Association (AMIA) Annual Symposium, Nov 2016, Chicago, IL, USA. [Presentation]
Adolescents with complex chronic illnesses, such as cancer and blood disorders, must partner with family and clinical caregivers to navigate risky procedures with life-altering implications, burdensome symptoms, and lifelong treatments. We conducted in-depth interviews, non-participant observations of clinical consultations, and surveys, to better understand common challenges and needs of chronically-ill teens and their parents that could be supported through design. Our paper draws on our study findings to propose design goals for sociotechnical systems to support teens in partnering in their care, highlighting the need for design to support gradually evolving partnerships in care.
Care Partnerships: Toward Technology to Support Teens' Participation in their Health Care. Matt Hong, Lauren Wilcox, Daniel Machado, Thomas Olson, Stephen Simoneaux. In Proc. SIGCHI Conference on Human Factors in Computing Systems (CHI '16). May 2016, San Jose, CA, USA.
Recognizing when a pediatric patient is experiencing physical responses to illness and treatment has significant importance for patients, especially as they undergo long-term treatment cycles such as chemotherapy, for which their successful recovery will largely depend on the careful balance between the effectiveness of treatment dose and its toxicity to the patient. Our prior studies with adolescent patients revealed that parents are predominantly in charge of tracking the patient’s symptomatic experiences and reporting them to clinical caregivers. Yet, they had difficulty understanding these patients’ everyday experiences while going through therapy, leading to discrepant interpretations about the patient experience.
We are running a series of formative design studies involving patients, family members, and clinicians, to formulate design requirements for mobile health (mHealth) tools for symptom tracking, communication, and management for adolescent and young adult (AYA) patients in oncology and hematology settings. Through co-design approaches, we are investigating how technology can support symptom-tracking in ways that respect patients' privacy and autonomy while enabling communication and family support.Visual ODLs: Co-Designing Patient-Generated Observations of Daily Living to Support Data-Driven Conversations in Pediatric Care. Matt Hong, Udaya Lakshmi, Thomas Olson, Lauren Wilcox. Proc. ACM CHI '18, The 2018 annual conf on Human Factors in Computing. Montréal, Québec, Canada.
Games for health (G4H) aim to improve health outcomes and encourage behavior change. While existing theoretical frameworks describe features of both games and health interventions, there has been limited systematic investigation into how disciplinary and interdisciplinary stakeholders understand design features in G4H.
We studied experts from the fields of game design, behavioral health, and games for health to learn how they think about design features in G4H. Applying methods including open card sorting and triading, we elicited themes and features (e.g., real-world interaction, game mechanics) around G4H.
We found evidence of conceptual differences suggesting that a G4H perspective is not simply the sum of game and health perspectives. At the same time, we found evidence of convergence in stakeholder views, including areas where game experts provided insights about health and vice versa.
In our ACM DIS 2017 paper, we discuss how this work can be applied to provide conceptual tools, improve the G4H design process, and guide approaches to encoding G4H-related data for large-scale empirical analysis.
Design Features in Games for Health: Disciplinary and Interdisciplinary Expert Perspectives. Christina Kelley, Lauren Wilcox, Wendy Ng, Jade Schiffer, Jessica Hammer. Proc. ACM DIS ’17, The 2017 Conf on Designing Interactive Systems. June 2017. Edinburgh, UK, 69–81. [Presentation]
We are exploring ways to leverage large-scale personal health tracking in developing a better understanding of the built environment and its impact on the health behavior of those dwelling in the space. As part of a larger mobile sensing study, we collected a range of health-related data from university students using phone sensors and Ecological Momentary Assessment.
With this dataset, we are developing techniques to map elements in the built environment to corresponding health behaviors that they afford. This mapping can lead to the creation of a building or site-level generalized health score, providing health applications with a wealth of additional context to inform future personal informatics systems. This is the first step in our larger pursuit of the design of situated informatics systems that use personally-generated, multi-modal data along with situated information about the built environment from Internet of Things instrumentation. Together, these data can be leveraged to identify health affordances of the environment, encourage healthy behavior, and promote wellbeing.
According to sedentary behavior research, most of us sit too much. But how much do we actually sit, and how much do we stand? What metrics should we really aim for in encouraging healthy standing? Through reaching out to physical therapists and health behavior experts, we uncovered four metrics that are important to track and surface to users. On the market, there’s a handful of devices and apps that attempt to track standing and sitting: they all fall short.
We prototyped a device that: 1. tracks when users sit and stand; and 2. connects to an iPhone via Bluetooth. We then applied the results of our research with sedentary behavior experts, combining it with our device, to build a system that accurately tracks sitting and standing and intelligently presents this data to users. We created reflective views of sitting and standing behavior after doing contextual inquiries and product review analyses. We iteratively revised our designs through rounds of experts reviews, before presenting them to users in a usability study.
This project represents Alex Ryan's MS-HCI project and includes Matt Hong and Lauren Wilcox.
Self-tracking has been shown to play an important role in managing physical health, but we do not yet have a comprehensive understanding of the role of self-tracking in mental wellness contexts. Focusing on stress management, we examined the experiences and challenges of those who actually self-track to achieve mental wellness goals, through a multi-institutional student survey.
We complemented student perspectives with findings from a study with student health professionals from two universities, who participated in a qualitative study examining the role of self-tracking for student mental health and wellness. Our paper discusses ways that self-tracking can enable improved understanding of student stress and approaches to stress management and identifies situations in which self-tracking is not useful as a strategy of management.
Self-tracking for Mental Wellness: Understanding Expert Perspectives and Student Experiences. Christina Kelley, Bongshin Lee, Lauren Wilcox. Proc. ACM CHI ’17, The 2017 annual conf on Human Factors in Computing. Denver, CO. May 2017 [Presentation]
We can now collect multiple streams of heterogeneous data relating to our behavior, physiology, and mood, through off-the-shelf consumer devices. But that data is currently reflected back to users in limited ways. We are interested in how people reflect on these types of personal data with respect to those of others, and how they determine which others are "like them" once these data are available.
Cohort (versus population) models are used in numerous medical research applications, but cohort models are often based on limited characteristics that are invisible to the end user. We are exploring ways of visualizing and presenting cohort characteristics, to enable individuals to interact with and reflect on their personal data---contextualized by the data of others who are "like them" in a variety of ways.
Researchers on this project include Clayton Feustel, Shyamak Aggarwal, Bongshin Lee (Microsoft Research) and Lauren Wilcox.
People Like Me: Designing for Reflection on Aggregate Cohort Data in Personal Informatics Systems
Clayton Feustel, Bongshin Lee, Shyamak Aggarwal, Lauren Wilcox. Proceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies (IMWUT). Vol. 3, Sep 2018. (To be presented at Ubicomp 2018.)
Together with Dartmouth University, Carnegie Mellon University, and Cornell University, we at Georgia Tech are interested in extending the seminal work of StudentLife, started by Dartmouth’s Andrew Campbell a few years ago. Campbell sought to determine if mental health and academic performance could be correlated, or even predicted, through a student’s digital footprint. We are proposing the Quantified Campus project as a logical extension, which aims to collect data from relevant subsets of a campus community through their interactions with mobile and wearable technology, social media and the environment itself using an Internet of Things instrumentation.
Two goals drive this project: a human goal of understanding wellness for young adults as well as an understanding of how one can perform such experimentation and address the significant security and privacy challenges. We invite everyone from the Georgia Tech community to join a conversation with the lead researchers from four universities to help influence the directions of this nascent effort.Students' Experiences with Ecological Momentary Assessment Tools to Report on Emotional Well-being. Larry Chan, Vedant Das Swain, Christina Kelley, Kaya de Barbaro, Gregory Abowd, Lauren Wilcox. Proceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies (IMWUT). (Accepted for presentation at ACM UbiComp '18.)
Recent research focused on online health information seeking highlights a heavy reliance on general-purpose search engines. We explore how such tools can support non-expert, patient-centered health information search.
We applied text-processing techniques and probabilistic generative topic modeling approaches to a large collection of web-based resources and complemented these with interactive user interface tools. Our search tools were designed to enable human strategies for searching and judging information to complement generative probabilistic topic models . We then evaluated our tools in a tablet-based study probe, called Remedy. Post-operative cardiothoracic surgery patients and their visiting family members used Remedy to find information about their hospital medications and were interviewed before and after their use. Domain experts conducted similar search tasks and provided qualitative feedback on their preferences and recommendations for designing these tools.
Findings from our study suggest the importance of four valuation principles underlying our tools: credibility, readability, consumer perspective, and topical relevance.
Patient-Centered Tools Medication Information Search. Lauren Wilcox, Steven Feiner, Tran H. Tran, David Vawdrey. Proc. PervasiveHealth, May 2014, Oldenburg, Germany. ICST, 49-56. [Presentation]
We designed prototype tools supporting abstracted, visual explanations of anatomical concepts and collaborative review and communication of diagnostic imaging data through interactive user interfaces. Our paper reports on a pilot study of the new interactive reporting tools with oncology patients (n=14), their parents (n=14) and their clinicians (n=5), to gauge acceptance of the prototype in the clinical oncology setting and identify needed improvements to our design.
Supporting Families in Reviewing and Communicating about Radiology Imaging Studies. Matthew Hong, Clayton Feustel, Meeshu Agnihotri, Max Silverman, Stephen Simoneaux, Lauren Wilcox. Proc. ACM CHI ’17, The 2017 annual conf on Human Factors in Computing. Denver, CO. May 2017