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)

Current Researchers: Lynn Dombrowski, Amy Voida, Melissa Mazmanian, and Gillian R. Hayes

Food assistance outreach workers assist clients in applying for governmental nutrition assistance programs utilizing both offline and online application systems. These outreach workers make e-Government applications and services accessible to their client populations, by engaging in extensive human effort on behalf of their clients by negotiating information exchanges between governmental organizations and individual clients, fostering client and government relationships, and non-directly supporting and explaining underlying governmental processes to clients.

Our research investigates several lines of inquiry. First, our research examines the role of different community partners who enable access and use of online services. Second, our work concerns understanding how different orientations towards the online application and service impact the application’s adoption and integration into community organizations and their work practices. Third, our work explores how the online application is implicated in reconfigurations of social networks and relationships within the community.

Research on outreach workers can better position future iterations of e-Government solutions, as a rich understanding gives design insight into how e-Government solutions work “in the wild”, how e-Government solutions exist within social contexts and value systems, and how e-Government solutions might address currently existing technical and non-technical barriers.

Current Researchers: Monica Tentori, LouAnne Boyd, David H. Nguyen, and Gillian R. Hayes

Individuals with autism spectrum disorder (ASD) often demonstrate impairments in social skills. Social skills training is an effective way to develop age and functioning-level social skills to be used in a variety of situations. One successful curriculum that is currently in use in schools for teaching social skills to students with ASD is the Social Compass. The Social Compass is a behavioral and educational intervention for group settings that uses stories and paper-based visual cues that, like a compass, serve to “steer the child in the right direction” when interacting with others. Although this intervention has been used successfully in schools with demonstrated positive outcomes, there are still open questions as to how the children might apply their newly learned skills outside the classroom. However, there is currently limited support for this kind of mobile, dynamic instruction and support. To offset this challenge, in this project we are exploring how innovative computing technologies enable the use of the Social Compass curriculum outside classrooms.

Mobile and augmented reality technologies can provide children with autism with mobile and dynamic social instruction. We have recently developed a novel mobile-phone based intervention for children with autism, the Interactive Social Compass (iSoC) [Tentori and Hayes 2010]. iSoc is a mobile and augmented reality application, we designed and developed, to help children with autism to identify potential interaction partners, react when social ruptures occur, tag scenes and consult social cues for social guidance. By receiving this information through their own mobile devices, each child gets direct assistance and reinforcement for practicing their social skills. Meanwhile, every activity is logged in the background, enabling automatic report generation. We are in the process of evaluating this system in a public school at Orange County, CA, USA. The lessons learned from the study may help people creating mobile systems, particularly systems for social skills training and other autism interventions.

This work is supported by Nokia, National Center for Women and UC Mexus.

The recent papers and posters associated to this project include:

Tentori, M., Boyd, L. and Hayes, G. R. A Mobile Social Compass. Poster presented at International Meeting for Autism Research (IMFAR), 2010.

Tentori, M. and Hayes, G. R. Designing for Interaction Immediacy to Enhance Social Skills of Children with Autism. Ubicomp 2010, 51-60

Current Researchers: Jed Brubaker, Janet Vertesti, Paul Dourish, and Gillian Hayes

The mass adoption of Social Networking Sites (SNS) includes the growing presence of representing individuals who are no longer alive. However, the death of a user does not result in the elimination of his or her account nor the profile’s place inside a network of digital peers. Indeed, friends’ use of a user’s profile postmortem to say last goodbyes, share memories, and coordinate funereal arrangements is a well known, if not frequently discussed.

Focusing on death brings to bear three important themes for social networks and the representation of identity for their users: embodiment, representation, and temporality. Embodiment particularly concerns the way that data objects and digital representations “stand for” human bodies. It encapsulates issues of access, issues of ownership, issues of management, issues of presence, issues of personhood, and issues of participatory status, both at the technical level and at the social. Representation invokes the traditional considerations of online identity, the presentation of self, and the crafting of acceptable personas as well as consideration of the ways in which records are created with specific purposes and representations in mind. Representation relates to embodiment in that it speaks to the relationship that holds between the data object and the human body, but it incorporates too the active, purposive, strategic practices of re-present-ing, that is, of making something present again, with particular ends in mind. Temporality concerns the notion of “lifecycles” as it has been applied in system development—the circumstances under which digital systems come into being, are put to use, and are taken out of service. The life of a user and the life of that user’s data are frequently not the same, an issue particularly acute when considering the continuation of dead user profiles in SNS.

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

Research Team: Jed Brubaker, Ellie Harmon

PIs: Paul Dourish, Melissa Mazmanian

This project is directly concerned with issues of scale in social-computational systems. How can we exploit the power of contemporary networks to bring people together to act and operate at scale? In particular, can we draw lessons from sociological investigations of social movements to turn current interests in social media and social networking into larger-scale actions? In his book on “smart mobs,” Rheingold (2002) documents the role of mobile technologies as coordinative tools in large-scale social action; although in most of the cases he documents, technology is used to support real-time coordination of existing interesting groups. Our question is, can social media help to engender those social interest groups and social movements on a large scale over time?

We are performing a a mixed-method investigation of social-computational systems, combining:

• The deployment and iterative refinement of a prototype technology for personal reflection in environmental sustainability, designed along lines suggested by research in social movements and media discourse;
• Quantitative assessment of the growth and development of participation in the communities linked by this system and relations to the structural properties of social networks and temporal aspects of information flow;
• Qualitative examination of the processes of identification with and enrollment into a social movement through the sharing of participation and resources for situating oneself within.

Current Researchers:
David Nguyen and Gillian Hayes

Past Collaborators:
Aurora Bedford, Alex Bretana, Yann Jouitteau, Gabriela Marcu, Brian Sone,
Marc Langheinrich (USI), James Scott (Microsoft Research), and Khai Truong (University of Toronto)

In this project, we apply a commonly used model for understanding information privacy – the Concern for Information Privacy (CFIP) model – and present the ways that this model and its associated questionnaire can shed light on information privacy concerns towards pervasive and ubiquitous tracking and recording technologies. Specifically, the CFIP model encourages analysis of data across four facets of experience: the collection of personal data, the risk of improper access, the potential for unauthorized secondary use, and the challenge of preventing or correcting errors in the data. Through multiple studies, we apply this model to tracking and recording technology used and appropriated in everyday life – both novel technologies (e.g., SenseCam, RFID) and more common technologies (e.g., CCTV, credit cards, rewards cards). We investigate people’s concerns for information privacy in the context of everyday life about recording technologies based in both technical and social influences. Furthermore, we identify areas not well handled by this model of information privacy and suggest avenues for future work, including research on how and when to notify people about recording technologies, awareness of data provenance and leakage, and understanding of and access to the data assemblage being created about individuals.

This work is supported in part by an NSF CAREER grant #0846063 and through a collaboration with Microsoft Research Cambridge.

Publications:
Nguyen, D. H., & Hayes, G. R. (2010). Information Privacy in Institutional and End-user Tracking and Recording Technologies. Personal and Ubiquitous Computing, 14(1), 53-72. [pdf]

Nguyen, D. H., Marcu, G., Hayes, G. R., Truong, K. N., Scott, J., Langheinrich, M., and Roduner, C. (2009). Encountering SenseCam:  Personal Recording Technologies in Everyday Life. Paper presented at the 11th International Conference on Ubiquitous Computing (UbiComp 2009). [pdf]

Nguyen, D. H., Kobsa, A., & Hayes, G. R. (2008). An Empirical Investigation of Concerns of Everyday Tracking and Recording Technologies. Paper presented at the 10th International Conference on Ubiquitous Computing. [pdf]

Girls get to “play engineer” by rotating through four roles each class period and wearing a button that says who they are and the great things they can do!

Multi-level mentoring includes professors working with college students working with high school students working with middle school girls!  We are all there together as a team, figuring things out.  Everyone has someone they can learn from and everyone has someone to mentor. In this way, we are able not only to introduce girls to technology but also to reinforce the interest in teenagers and young adults.

Special thanks to Barb Erickson for her guidance on this project as well as to Microsoft Research, NCWIT, and Google for their support.  And of course, thanks so much to Girls Inc, Sarah Drislane, and the ladies of WICS for their continued hard work!

Marcu, G., Kaufman, S.J., Lee J.K., Black, R.W., Dourish, P., Hayes, G.R., Richardson, D.J.  Design and Evaluation of a Computer Science and Engineering Course for Middle School Girls.  Proc SIGCSE 2010.

PIs: Gillian Hayes, Yunan Chen, Karen Cheng

Co-Investigators: Sheba George (CDU), Gene Spiritus (UCI MC), Sherrie Kaplan (UCI Public Health)

Student Researchers: Soyoung Lee, Sunyoung Park, Boaz Gurdin, Jianlin Shi

Project: There is no doubt that improving health care in the United States is a major focus for politicians on both sides of the aisle, corporations, and patient advocates.  In many cases, information technology is hoped to be the solution to a variety of problems in health care, such as improving efficiency, patient safety, accountability, billing, and more.

However, development and implementation of large-scale information systems, like electronic medical records (EMR), often require expertise that hospitals and clinics may not have and substantial financial investments that would only be recouped after many years. To successfully implement large-scale health information systems, such as EMRs, we must understand the human processes underlying their implementation, rather than the technological aspects only. Because the evaluation of large-scale health information systems can be incredibly complicated, most evaluations, to date, have been limited in time and scope. Our research team has a unique opportunity to conduct a comprehensive evaluation of the implementation of a large-scale health information technology system in a major research and teaching medical center

This is focused on:

1)    understanding the human-centered and organizational issues of the records transition process;

2)    identifying and evaluating user-level facilitators and barriers to EMR adoption and acceptance; and

3)    identifying and evaluating the organizational factors in adoption and acceptance of EMR.

Researchers: Leslie Liu and Gillian Hayes

Personal health records have enormous potential to improve both health documentation and patient care. The introduction and adoption of these systems however, has have been relatively slow. We conducted three different types of studies focused on evaluating PHR systems: a traditional usability evaluation, clinician interviews, and a heuristic evaluation. The results of these evaluations demonstrate that a combination of usability, functionality, and socio-cultural influences are impeding PHR adoption and use. They also demonstrate that heuristic evaluation, using modified heuristics, can be used to find many, although not all, of the challenges to use of particular healthcare technologies.

Publications:

Liu, L.S. and Hayes, G.R. Evaluation the Usefulness and Usability of Collaborative Personal Health Record Systems. CSCW Research in Healthcare:  Past, Present, and Future. CSCW2010 Workshp. Savannah, GA. February 2010.