As part of the Whole Communities–Whole Health research grand challenge, we’ve promised to give the results of our community health study back to the people who need it most — our participants. To do this, our team envisioned a mobile dashboard that study participants can install on their phones to serve as this essential data communication channel. We reached out to Christine Julien, professor in the Department of Electrical and Computer Engineering and one of the lead developers of the Whole Communities–Whole Health mobile app, to find out more.
As we first began mulling the idea for a research grand challenge that would look at the health of marginalized communities, we were aware of some of the shortcomings of traditional studies of this kind. A lack of participant diversity, a cumbersome data collection process, and the failure to give findings back to the participants themselves were all things we felt had been lacking. Sometimes the latter didn’t happen until years after study completion — if at all — rendering much of the data useless to people who needed real change right away.
In our early engagement with the community members, we learned that many may not have access to a computer or the internet in their homes. However, almost everyone has a smartphone of some sort. Therefore, it made sense to design a smartphone app to ensure that the data and resources are as accessible as possible to our participants and to community groups who might be interested in the findings of our study.
We were also interested in an app rather than a mobile-friendly website because it would give our team access to sensors on participants’ mobile phones to collect additional information for the cohort study, including how the participant uses their device, their movements in the community, and their access to communication networks like cell phone towers and Wi-Fi. This gives us information about factors such as their level of mobility and their stress and wellbeing, dependent on how often participants use their devices.
Our work to create the app started somewhat non-traditionally. In the summer of 2020, at the height of the pandemic, our team began to mull the idea that the app we were hoping to create for Whole Communities–Whole Health could serve as a model or test case for something even more urgent. At the time, The University of Texas at Austin was preparing to bring students, faculty, and staff back to campus, and we thought we could help to do that more safely by designing a mobile app that would allow people to track their symptoms, log COVID-19 test results, and see the trend line of cases in the Austin area.
We were working remotely at the time, so designing an application of this kind was no small feat. Our researchers and students from engineering, computer science, and medicine worked from home to create what became known as the Protect Texas Together app, which has been instrumental over the past year to ensure safety on campus amid the pandemic.
Once our team moved into maintenance mode for the Protect Texas Together app, we were able to shift back to our original focus: to create the mobile app that would underpin Whole Communities–Whole Health’s cohort study. We brought with us significant learned experiences, a robust development and code review process, and features implemented for the Protect Texas Together app that are directly integrated into the new app.
The Whole Communities–Whole Health app, called Hornsense, is a smartphone-based application that will serve as the cohort participants’ primary portal into their participation in the study. Using the app, participants can track the materials they receive, like sample collection kits, in-home sensing devices, and wearable devices. As part of the study, they also are asked to complete periodic surveys about their health and wellbeing or their environment, and these surveys are delivered through the app and then submitted into our study database.
Most important, the app provides a dashboard that acts as a window through which the participants can view the data they have contributed to the study — from data sensed on their smartphones to survey responses and sample collection results — and compare it to aggregated, anonymized information about their fellow community members. This means the information is a summary about the community, rather than individualized data that can be tied to a single person.
“This will allow our research team to evolve the study to look at issues and situations that are important to our participants, not just concerns that we have identified. This is part and parcel of the Whole Communities–Whole Health vision of community-engaged research, where the goal is to do research with the community rather than research on the community.”
Finally, the app will allow study participants to fill in reports of concerns in the community, ranging from indications of poor air quality or bad smells in the air to poor water quality or incidents of racism. This will allow our research team to evolve the study to look at issues and situations that are important to our participants, not just concerns that we have identified. This is part and parcel of the Whole Communities–Whole Health vision of community-engaged research, where the goal is to do research with the community rather than research on the community.
The app is available for both Android and Apple devices. We worked with user interface and user experience experts to design the layout and look-and-feel of the app, and the entire team, in turn, worked closely with community members to get their feedback on aspects ranging from the layout of widgets in the screens of the app to the colors and icons that display information. Potential study participants also wanted a way to get connected to resources like parenting or mental health support if they discovered health issues in the data, so we provided a link to a website we created where they can access this information.
From the home screen, users can quickly access their favorite aspects of the dashboard or view available surveys they must complete. By using the quick navigation across the bottom, the user can also reach the full dashboard, make a community report, or view and complete their surveys. The dashboard screen of the app allows the users to view the information that is collected about them and the community and see metrics and visualizations that allow them to compare their own data to data about their community.
Ensuring the privacy of the data collected as part of the study is essential. Everyone participating in the Whole Communities–Whole Health project, including each app developer, recognizes that data privacy is not just an expectation but a responsibility. I’ve written about privacy concerns and the steps we’re taking to address them, but without privacy and security in the app and collected data, there can be no trust in the system or the researchers. Without that trust, community members will be justifiably reticent to collaborate, and that collaboration is essential to achieving the goals of the Whole Communities–Whole Health project.
Creating this app has truly been a team effort. And while we realize that developing a product of this kind “in-house,” rather than taking advantage of something already on the market, is not the fastest and easiest method, we have found it is more rewarding for our graduate student researchers and allows us a significant amount of freedom and flexibility in our design. Because the team is in-house, we are very agile. We can respond to requests for new features or change the interface very quickly if team researchers or community members raise concerns. And our students are truly incredible, not only balancing their work on the Whole Communities–Whole Health app with their coursework and other obligations but also delivering high-quality work while supporting each other as a team.
“One of the reasons why I decided to study software engineering was because of its potential to directly impact a community and joining the Hornsense development team as part of the Whole Communities–Whole Health research initiative allowed me to do just that.” — Jessica Pham, graduate research assistant
But perhaps most important, creating the in-house development team provides a one-of-a-kind opportunity for our students, an opportunity that prepares them for a variety of future career paths. They get the chance to practice software development skills in the context of a full-stack application, one that involves both the interface that the participants see as well as the back-end server infrastructure that is essential to ensuring the pieces work together. In addition, the students really understand, through experience, how such an app can be responsive to a community’s needs. The importance of providing this learning experience for our students cannot be overstated.
One of our graduate research assistants, Jessica Pham, called it an “invaluable experience” getting to work with professionals and peers from various fields. “Not only am I able to apply and develop my technical skills on a unique project, I am also pushed to think outside of the box in order to tackle the issue of how to best collect and share data to study participants while also safeguarding their privacy,” she said.
As I write this, we are in the process of testing a beta version of the app within the Whole Communities–Whole Health research team. We hope to roll out the first early version of the app to community members before the end of 2021. As we prepare to deliver the app to cohort study participants, researchers working directly with the community members will help them install the app on their phones and give them an orientation about how the app works, where different features and functions are located, and how to contact study personnel with questions.
As with any interdisciplinary research project, the creation of this app has not been without challenges. As the co-lead of the development team, I serve as a bridge between the researchers and community members, which requires that I balance the requirements of the study with the capacity and capabilities of the research team. But when I honestly reflect on the experience developing the app to date, I can say that not only has it provided excellent opportunities for our student researchers, but it has also been an unmatched learning experience for me, too. This is especially true with respect to exploring how software engineering and mobile computing innovation can support and benefit from interdisciplinary collaboration. While my day-to-day research provides the opportunity to innovate in mobile computing, rarely do I get to witness and experience the direct impact that these innovations have on real people in the community.