Research Team: Sen Hirano, Karen P. Tang, Dini Baker (EDAC/CHOC), Marni Nagel (CHOC)
Past Collaborators: Monica Tentori, Leslie Liu, Sheba George (CDU)

PIs: Gillian R. Hayes, Karen Cheng (CDU)

Premature birth is associated with long term health impairments including neurological and cognitive deficiencies, chronic lung disease, and altered growth patterns of lean, fat, and bone tissues. Furthermore, parents of premature infants may experience excessive stress, post-partum depression, and other challenges associated with the birth of and caring for their child.

We are designing, developing, and deploying an innovative and feasible mobile solution called Estrellita. This system is an automated capture and access tool that allows parents of premature infants to capture relevant information of their newly born child and share it with their healthcare providers, close relatives, and friends.

Estrellita includes two interfaces: a mobile application (Figure 1) and a web-based clinical interface (Figure 2). Using the mobile application, users can record observations of daily living (ODLs) for the infant and caregiver, share these data with clinical providers, and visualize past recorded ODL data. Through the website, healthcare providers can interact with the caregiver and keep abreast with the infant’s ODLs through a series of simple visualizations and data summaries.

Figure 1. Screenshots of Estrellita mobile application: main overview screen (leftmost), input screen for recording infant’s weight information (second from left), inbox for exchanging messages between caregivers and clinicians (second from right), a widget placed on the phone’s home screen (rightmost).

Figure 2. Screenshots of Estrellita’s web interface.

The mobile application allows caregivers to update their baby’s health information (Figure 1, leftmost), consult system-generated or clinical-generated warnings (Figure 1, second from the left), and update data about their own health and well-being (Figure 1, second from the right). Estrellita uses a widget to provide a glanceable view of their data and a quick way to access previously recorded information (Figure 1, rightmost). Caregivers can also flag data points that are troubling them so they can discuss them later with their clinicians.

The web-based interface allows clinicians to consult patient information through a dashboard-like interface (Figure 2). Representations of the patient’s data must be made accessible to caregivers as well as to healthcare professionals. These representations include both alerts and visualizations at levels appropriate for both caregivers and healthcare providers. The Estrellita website also allows caregivers and healthcare professionals to exchange messages with one another.

We are currently in the process of evaluating this system in a public clinic at Orange County, CA, USA.

This work is supported by the Robert Wood Johnson Foundation.

Check out our posts on the Robert Wood Johnson Project HealthDesign blog:

• Interpreting the Absence of Data (Nov ’11)
• The Challenges of Locating Parents of Preterm Infants (Oct ’11)
• Creating a Better World for Premature Infants (Sep ’11)
• Observing Fussy Babies and Their Fussy ODLs (Aug ’11)
• Using Cell Phones to Improve the Health of Babies and Children Around the World (Jul ’11)
• What’s in a Name? (Mar ’11)
• FitBaby on Cutting Edge of Affiliation Between University and Hospital (Dec ’10)
• A Reminder of the Important Work We Do (Oct ’10)
• Action Research: A cyclical intensity for sustainable social change (Sep ’10)
• In Assimilating ODL, Data Personal Experience Plus an Open Mind Equals More Effectiveness (Aug ’10)
• Strengthening Parent-Infant Bonds (Jul ’10)
• The relationship between ADLs and ODLs (this one is in Spanish too!) (Jun ’10)
• Are there ODL’s in Diapers? (Apr ’10)
• An introduction to our team (Mar ’10)

Recent publications and talks:
Tang, K.P., Cheng, K.G, Hirano, S., Nagel, M., Baker, D., and Hayes, G.R. (2011) Addressing the Design Challenges for a Clinically-Informed Data Capture Tool Targeted for Caregivers of Premature Infants. In Proceedings of Workshop on Interactive Systems in Healthcare (WISH 2011), 14-18.

Liu, L.S., Hirano, S.H., Tentori, M., Cheng, K.G, Park, S., and Hayes, G.R. (2011) Improving communication and social support for caregivers of high-risk infants through mobile technologies. In Proceedings of the ACM 2011 Conference on Computer Supported Cooperative Work (CSCW ’11), 475-484.

Hayes, G.R., Patterson, D.J., Singh, M., Gravem, D., Rich, J., and Cooper, D. Supporting the Transition from Hospital to Home for Premature Infants Using Integrated Mobile Computing and Sensor Support. Personal and Ubiquitous Computing. In press.

Watch a talk Gillian gave at Microsoft Research that covers some of the autism and FitBaby work:   http://research.microsoft.com/apps/video/default.aspx?id=121512 (March 2010)

Project: Visual schedules and choice boards are tools used in current best practices for helping children with autism and other special needs. These non-verbal kids need help communicating their choices, understanding time and activities, and so on. We are working with Windows SmartPhone, Linux small displays, and large touchscreen-enabled platforms to develop solutions that ease these burdens, provide logging and visualizations of data, and help automate some of the features of using these communication techniques.

We are also investigating how novel recording technologies, like the Microsoft SenseCam can be used to augment communication between non-verbal children with autism and their caregivers – including both parents and teachers.

Watch a talk Gillian gave at Microsoft Research that covers some of the autism and FitBaby work:  http://research.microsoft.com/apps/video/default.aspx?id=121512

This work is supported in part by technical assistance and equipment through a collaboration with Microsoft Reserach Cambdridge.

This work is supported by AutismSpeaks Innovative Technologies For Autism program, a generous equipment donation from Nokia Research Palo Alto, and an NSF CAREER award.

The vSked and SenseCam for Autism projects will be presented at IMFAR 2008 in Chicago.

This work was presented at IDC as a poster at the main conference and at the Design for Children with Special Needs Workshop:

The vSked and SenseCam for Autism projects will be presented at IMFAR this year in Chicago.

This work was presented at IDC as a poster at the main conference and at the Design for Children with Special Needs Workshop:

vSked: Interactive Visual Scheduling Systems
Gillian R. Hayes
David Nguyen
Michael Yeganyan
Sen Hirano
Gabriela Marcu

SenseCam
Gillian R. Hayes
Gabriela Marcu

Mocotos:  Mobile Communications Tools for Children with Special Needs
Mohamad Monibi
Gillian R. Hayes

Interactive and Intelligent Visual Communication Systems
Gillian R. Hayes
Donald J. Patterson
Mohamad Monibi
Sam Kaufman

This work was also presented at the International Meeting for Autism Research as a poster:

Design of Interactive Visual Scheduling Systems
Sam Kaufman
Donald J. Patterson
Gillian R. Hayes

Our paper on the design of a mobile tool based on the Social Compass Curriculum was accepted for publication at this year’s Ubicomp conference. The citation and abstract are below…. look for the camera ready version of the paper to show up on our publications page as soon as it is done.

Tentori, M. and Hayes, G.R. Designing for Interaction Immediacy
to Enhance Social Skills of Children with Autism To Appear Proc Ubicomp 2010. Copenhagen, Denmark. September 26-29, 2010.

Abstract:

Children with autism often require therapeutic interventions to support engagement in effective social interactions in different contexts. In this paper, we present the results of a study conducted in three public schools that use an educational and behavioral intervention for the instruction of social skills in changing situational contexts and ongoing social interactions. The results of this study led to the concept of interaction immediacy to help children maintain appropriate spatial boundaries, reply to conversation initiators, disengage appropriately at the end of an interaction, and identify potential communication partners. We describe design principles for Ubicomp technologies to support interaction immediacy and present an example design. The contribution of this work is twofold. First, we present an understanding of social skills in mobile and dynamic contexts. Second, we introduce the concept of interaction immediacy and show its effectiveness as a guiding principle for the design of Ubicomp applications.

Gonzalez-Fraga, J., Tentori, M. and Martinez, F. (2010) “Artifacts’ Roaming Beats Recognition for the Estimation of Care Activities in a Nursing Home”, To be presented at  PervasiveHealth (2010), Munchen, Germany, March 22-25

Congratulations to Monica Tentori and co-authors on the acceptance of their paper to IEEE Intelligent Systems.

Tentori, M., Rodrigez, M.D and Favela, J. “An agent-based middleware for the design of activity-aware applications” Accepted to publication in IEEE Intelligent Systems

An Empirical Investigation of Concerns of Everyday Tracking and Recording Technologies
David H. Nguyen, Alfred Kobsa, Gillian R. Hayes

Abstract: “This paper presents an exploration and analysis of attitudes towards everyday tracking and recording technologies (e.g., credit cards, store loyalty cards, store video cameras). Interview participants reported being highly concerned with information privacy. At the same time, however, they also reported being significantly less concerned regarding the use of everyday technologies that have the capabilities to collect, process, and disseminate personal information. We present results from this study that both identify and begin to explain this discrepancy.”

“Opportunities for Pervasive Computing in Chronic Cancer Care “ Accepted to the Pervasive 2008 conference in Sydney Australia.

Abstract: While changing from a predominantly terminal to an increasingly chronic condition, cancer is still a growing concern. Accompanying this change are new opportunities for technologies to support patients, their caregivers, and clinicians. In this paper, we present an in-depth study of cancer communities. From this exploration, we define and describe the concept of a personal cancer journey. We examine lessons and design opportunities across this journey for sensing and context-awareness and capture and access applications.