Supporting Informal Healthcare Teams at Home using Sensor Data

Date: 2017 ~ Present.

Research & Design Strategy

Understand Care Team Members' Lived Experience using Interview and Focus Group

The goal of the research project is to understand the lived experience of patients with neurological impairments such as spinal cord injuries and that of their family members, and clinicians, as such chronic care often time requires assistance from them. I am particularly interested in how members of such care team collaborate and coordinate with each other with the goal of informing the design of sensor-based technology that can collect data to support such collaboration.

The overall approach for this project is to ground our design based on a solid understanding of care teams' experiences. I employed multiple methods to understand the care team members' perspectives and invited a patient to co-design with the research team.

My team and I started by using semi-structured interviews and a focus group to obtain team members' experiences of managing or helping to manage the illness and care activity.

Engage Stakeholders with the Concepts of Sensors and Data through Sketches to Facilitate Brainstorming

With a solid understanding of the way care team members are collaborating and the challenges they faced currently, I then invoked sketches and other visual materials to introduce the concept of sensor and data. I employed visual materials as tools because our participants might not be familiar with the concept of sensors and data. Therefore, it might be hard for them to provide feedback simply through methods such as interviews that are heavily based on experience. The use of such visual materials helped our participants to reflect on how sensor technology could create a positive impact on their work and the unintended consequence that designers of such technology should be aware of.

Conduct Thematic Analysis to Identify Key Insights for Sensor System Design

By performing thematic analysis on the transcripts and memos, my team and I identified design implications for systems and applications that use sensor data to support care team collaboration. The two major themes were supporting routinization of care activity and allowing fine-grained control over data to share. For more details, please see the Outcomes section, including publications.

Co-Design with a Young Adult as Design Partner to Identify Key Attributes and Develop a Web System

To investigate how fine-grained control can be realistically implemented for regular users without technical training, I employed a co-design process with an undergrad student with a neurological condition for two semesters to design a mobile app for managing the sharing of sensor data. To truly engage the participant as a co-design partner, I designed a short version of the Human-Centered Design curriculum for the participant to get familiar with concepts such as persona and scenario. I invited the participant to be the designer who could bring in his own experience interacting with care team members to guide the design. Through weekly co-design sessions, I worked with the participant to design a mobile app that allowed a patient to control sensor data collected for and about the patient by regulating data sharing with care team members.

As the participant was very passionate about video games, I also explored the possibility of incorporating certain game design elements (e.g., visual) to enrich the experience for patients to understand how to control the sharing of their data, in addition to the mobile app. I have implemented a system, Data Checkers, and conducted a comparison study to evaluate the effectiveness of the design to support data sharing in chronic care.

Findings & Implications

Designing Technological Intervention and Support to Facilitate Routine Development

By engaging with participants through various approaches, my team and I have identified two key aspects that designers should consider. First, care activities (e.g., drinking waters and doing bowel program) are being routinized continuously for patients and care team members to provide stability of care. Sensor-based technology should tailor user engagement with different levels of proactiveness based on the stage of routinization to provide the necessary support to care teams.

Support Fine-Grained Control over Data Sharing to Balance Sharing and Privacy (Sharing Just Enough)

Second, patients desire to gain independence progressively within a complex and ever-changing care team. Patients want to control their lives but are not familiar with the nature of sensor data. Sensor-based technology should allow fine-grained control over data being shared to different care team members and provide support for patients to jump-start and understand the data sharing process. At the same time. as health, care team, and hence the care evolve, care team members will need a certain level of autonomy to access data so as to support their work effectively. Sensor-based technology should allow data sharing to be continuously negotiated among care team members.

Systems & Applications

An interactive system, Data Checkers, using a board-game metaphor such as Checkers was developed to support fine-grained control. Data Checkers' system consists of a front-end user interface and a backend server. The backend server was developed to support the interpretation and enforcement of sharing decisions. I conducted a within-subject study to compare our design with another state-of-the-art design proposed by fellow researchers. My evaluation demonstrated that Data Checkers allowed participants to effectively think and control data sharing of multiple sensor data sources with care team members and has the potential to support the long-term management of sensor data.