In January 2020, I began my year as chair of Whole Communities–Whole Health. The world was a very different place. We were in the midst of preparing for a very ambitious faculty hiring plan. Our community engagement efforts were maturing and helping support a shared understanding of the health concerns of our local communities. We were also in the sprint towards the launch of a five-year-long study in the community, which would help bridge the gap between science and advocacy and lay the groundwork for an approach to promoting resilience in children and families — an approach that we hoped would resonate with researchers and communities throughout the United States.
Then a world-wide health crisis emerged.
The COVID-19 pandemic has introduced obstacles to all aspects of life — some minor or inconvenient, others devastating. At the same time, the sociopolitical climate around race and equity is a call to action for all. For Whole Communities–Whole Health, these issues are central to our mission and the motivation for our foray into interdisciplinary research, which relies on each person’s unique perspective. I have been proud of the ability of our team to meet the challenges of this changing world and the research landscape before us. As we draw nearer to the end of 2020, I reflect on how we need more voices and more perspectives to truly meet our goals of innovation, engagement, and service.
Designing a Cohort Study
The overall goal of Whole Communities–Whole Health is to create a new scientific approach to addressing risk and resilience in communities and families that face significant social and environmental challenges by looking at things like stress, sleep quality, air quality and other factors.
In January 2021, we will kick off our five-year cohort study that will use technology to examine dynamic changes in health and the environment of children in Del Valle to determine what factors promote resilience.
Before we launch, all the pieces of a complex puzzle must be positioned. One piece is building relationships among community leaders, institutions, and our own Community Strategy Team. This is not an event; it is a process, and it will continue throughout the life of Whole Communities–Whole Health.
Our Community Engagement Committee, which brainstorms efforts to connect to families and children, has been tremendous in seeking out opportunities to broaden our reach and create partnerships with organizations like the Children’s Wellness Center, Del Valle ISD and the group MEASURE, which uses data to help underrepresented communities. These groups share our interests in child health and development.
The second piece of the puzzle involves crafting the technological innovations needed to study the health and environment of children and families. This includes designing a smart beacon that can be placed in homes to measure things like indoor air quality, as well as new mobile phone applications to measure activity levels and send surveys to participants.
And as we move into the pre-launch phase of Whole Communities–Whole Health, a third puzzle piece has become critically important: working directly with residents of Del Valle to design the study in a way that is responsive to the needs and concerns of families and children.
Most studies of health and development are driven by academic researchers and their scientific interests. While everyone involved in Whole Communities–Whole Health certainly has particular health outcomes they want to study, the key to our success will be in the dialogue and planning done jointly with study participants and their communities. Together, we will determine what measures are generally important for the study of health and development, what cutting-edge tools Whole Communities–Whole Health can use for these measures, and what benefits could emerge for the community from these measures.
We are currently engaging members of our Community Strategy Team, Whole Communities–Whole Health-affiliated faculty, students, staff and the broader UT community in seven different internal working groups to take a deep dive into these questions. These working groups are considering questions ranging from how to non-invasively assess immune function to how to measure social interactions using technology.
We’re planning to launch 10 community focus groups with Del Valle residents in October with the support of MEASURE that will help us to determine what factors we will study. Critical measures included in our planning are sleep quality, air quality, family well-being, discrimination stress, and access to health resources. We will be asking focus group participants about what measures are important to them, address concerns about the tools we might need to use to measure health and the environment, and learn about community perspectives on what promotes resilience. The measures that are selected jointly by families and researchers will provide a novel lens with which to see the Whole Communities–Whole Health mission and will set the direction and focus of all our efforts in 2021, as we begin our journey with study participants.
It is in exciting time for us. As one of our long-serving Community Strategy Team members remarked enthusiastically, Whole Communities–Whole Health is starting to take its shape.
Protecting Texas Together
While some of our work has hit delays because of the pandemic, we are proud of what we have been able to achieve during the shutdown. Aside from starting to lay the groundwork for our multi-year cohort study, our teams have used their expertise to help both tackle the COVID-19 pandemic and to learn from it.
We were well poised to do so because we spent the first two years of Whole Communities–Whole Health journey developing technological tools to measure physical and mental health remotely and that has given us a wealth of expertise in app development, data processing, the dynamics of participant engagement and issues related to data privacy and security.
Our Whole Communities–Whole Health “Measures, Analysis, Data Transfer, and Storage” group — appropriately named MADS — is made up of terrific problem solvers. When UT administrators were looking for tools to help safely re-open campus, I saw a place for this expertise and enthusiasm to play a key role in helping to create a safe environment for UT staff and students to work and learn.
Members of our MADS team over the summer joined a talented group of UT undergrads to create the Protect Texas Together app, which allows students and staff to track their COVID-19 symptoms, get connected to medical resources and — potentially, in the future — will even assist with contact tracing.
This app will continue to evolve as the needs of the UT campus change over time and may serve as a template of a community-oriented tool for monitoring COVID-19 risk and giving users access to resources that support mental and physical health. The app embodies the Whole Communities–Whole Health philosophy of protecting the privacy and security of users so that access to healthy living does not come with risks.
Additionally, Whole Communities–Whole Health has environmental engineers who are conducting wastewater sampling to look for COVID-19 hotspots within Austin and on campus, and many of our indoor air experts are launching a campus study to examine university HVAC systems and learn how to create safer environments during health crises like we’re facing now. At the same time, engineering Assistant Professor Zoltan Nagy’s work using Wi-Fi routers to determine building density has new applications as a tool for monitoring the capacity of buildings to support social distancing to keep the UT campus safer.
Pivoting to Meet the Challenges of COVID-19
In addition to helping make the campus and community safer amid the pandemic, the Whole Communities–Whole Health initiative has been immersed in many research projects to see how technology can capture the characteristics of this new social and physical world in order to see its effects on the health and wellbeing in children and families.
Just before the pandemic, we were finishing a study examining the relationship between biological indicators of stress, perception of stress, life events, and lifestyle in UT undergrads. While it may have been easier to call it a day and move on, it occurred to our research team that re-engaging our study participants to better understand how these variables were being impacted by the COVID-19 pandemic could give us insights into the processes of psychological risk and resilience. We were able to pivot the study rapidly, deploy technology, and conduct virtual observations throughout the summer. Beyond the data that we’ve collected, this approach has given us insight into how to rapidly adapt methods to conduct “contactless” science, in which we collect information without face-to-face interaction. This is a skill that will likely serve us well as we launch into the next phase of Whole Communities–Whole Health.
For other ongoing studies, similar recruitment and study methods are now par for the course. Our Household Survey is now online, and we are learning more each day about the health and child development needs of Del Valle families. We’ve also launched a qualitative interview to assess how the COVID-19 pandemic has affected families. Through all these efforts, we are learning about communities and learning how to be resilient scientists ourselves.
Staying Together While We Are Apart
The current public health crisis is an ongoing threat to all. The risk of illness and death are real and visible. For families and children, COVID-19 brings with it obstacles to learning, socializing, maintaining work and finances and childcare. Being a parent myself, I am reminded every day of the challenges of trying to work from home while also meeting the intellectual, social, and emotional needs of a school-age child.
Whole Communities–Whole Health has been engaging in efforts to support community needs through sharing resources focused on coping with stress, keeping families healthy and active, and keeping healthy homes. We developed both a new website and an “Ask a Scientist” portal to share our expertise on a broad range of topics related to COVID-19.
Working with Del Valle ISD, we distributed 2,460 activity bags to families to provide some fun and healthy activities to keep children engaged during the summer break. Thanks to our new Community Engagement Specialist, Shirene Garcia, this monumental effort was a great way for our team to connect to communities — keeping us together, even though we are apart.
The isolation that comes from efforts to keep everyone safe and healthy are not without costs, though. For many families in the Austin area and beyond, those costs are felt even more deeply due to a lack of access to the internet. With schools moving education online and the dependence on Wi-Fi for telemedicine and connection to loved ones near and far, the digital divide is highlighting inequities that persistently jeopardize the health and well-being of historically marginalized communities. Whole Communities–Whole Health has been active in discussions regarding internet access and how we can better leverage technology to keep all members of society connected with each other and with the services that are essential to everyday living in a pandemic and beyond.
Looking forward
A complex puzzle takes time to build. Whole Communities–Whole Health is entering a new phase of dynamic planning and partnership with communities that will help to position some important pieces of the puzzle on the board. However, we always need to be thinking of the pieces that might be missing. Understanding the sociocultural context of families and children requires consideration of racism, structural inequities, and the lapses in inclusiveness that are so salient in our times. As we forge ahead, we hope to broaden our perspectives and the diversity of our voices so that this initiative can meet the challenge of bridging the gap between science and advocacy.