For a child battling cancer, an unexpectedly high temperature can initiate a race against time to reach providers who can treat and monitor symptoms. And for families in low- and middle-income communities in Mexico, pediatric cancer care is even more of a challenge. Fragmented healthcare systems, the absence of trackable health data, and a lack of access to healthcare facilities with readily available resources are fueling a race not easily won.

Now, a study to evaluate the preliminary design and usability of a cooperative cancer monitoring tool has published successful findings that may address this gap in care.

An interdisciplinary team of 30 researchers and health professionals from the University of Notre Dame, the Hospital Infantil de México Federico Gómez (HIMFG) and the National Institute of Public Health of Mexico (INSP) are working together to develop a comprehensive health app, SaludConectaMX, that can be accessible to clinicians in a hospital setting and caretakers at home.

“SaludConectaMX represents the dedicated effort of an interdisciplinary team of researchers and practitioners across three institutions and two countries, all united by the goal of driving innovation in service of society — reflecting the University’s commitment to building bridges as a force for good,” said Nitesh Chawla, founding director of the Lucy Family Institute for Data & Society and lead author of the project’s publication. “While we are still early in our journey, the success of the pilot study inspires us with hope for the transformative impact SaludConectaMX will have in supporting families battling pediatric cancer.”

Chawla and Angélica García Martínez, an international scholar and postdoctoral research associate for the Lucy Family Institute, worked together to organize the cohort of international researchers.

“Our work with the Hospital Infantil de México Federico Gómez includes supporting pediatric cancer patients with febrile neutropenia, a condition that occurs when a pathogen is present in the bloodstream, causing high temperatures in patients with lower-than-normal levels of white blood cells. Without immediate care and extended hospital stays, these patients have poor health outcomes,” said Garcia Martinez.

More than half of children in Mexico experience extreme poverty — most without health coverage and social welfare benefits that provide quality health and nutrition for families struggling with life-changing illnesses. In 2022 alone, 95% of emergency room consultations at HIMFG were for children without health insurance.

While mortality is linked to various factors, including age, type of tumor, stage at diagnosis and genetic predisposition, the financial burden and fragmentation of health services available to families in low- and middle-income communities are generating delays in diagnosis and treatment of infection-related complications — reducing the chances of positive health outcomes. Based on available data, it is estimated that survival rates for childhood cancer in these communities in Mexico is half the rates observed in high-income countries.

Additionally, many of the families attended by HIMFG have only completed an elementary school education. For this reason, they struggle with health and technical literacy. At the same time, the absence of a tool for tracking health information including childhood cancer cases is hindering a comprehensive understanding of factors that may contribute to complications, creating financial burdens that push families deeper into poverty and strain public health resources. The Lucy Institute’s collaboration with HIMFG aims to alleviate some of these challenges.

“The SaludConectaMX system is a cooperative way for physicians and caretakers to monitor a patient’s evolving health trajectory during cancer treatment when they are most vulnerable to developing life-threatening complications,” Gracia Martinez said.

The SaludConectaMX system features a holistic approach to monitoring the signs and symptoms of adverse health effects that can occur during the cycle of cancer treatment. The software development was led by Michael Kennel, lead software solutions architect for the Lucy Family Institute, and Notre Dame alumnus Patrick Soga, supported by a technical team in Mexico. It features two applications — a hospital web component and a family mobile application — to track clinical indicators, including standard clinical information, treatment plans and social determinants of healthcare access. Information is securely stored and accessed through individual account registrations.

Once enrolled, caretakers can submit information, including their mental health status and complementary social determinants of health, which may play a key role in a patient’s risk factors for developing complications during their cycle of treatments.

Horacio Márquez-González, a clinical researcher for the HIMFG, is working with Notre Dame researchers to identify the key features needed in the system’s design. “A significant challenge is that the needs of caregivers are distinct from those of health personnel. When complications arise, caregivers must provide continuous care to the urgent needs of the child, which may or may not include submitting health information including oxygen saturation level, blood pressure and temperature into the system.”

In the clinical setting, health professionals rely on the information that caretakers submit, which can be subjective depending on the level of training and development of skills a caretaker has received.

“When we started developing the system, we had to consider the impact that it would have on hospital workers and families who might rely on it to monitor their child’s care. This meant identifying the challenges with mobile application usage and access to reliable networks, along with other barriers that might limit communications between users and the interface,” said Karla Badillo-Urquiola, the Clare Boothe Luce Assistant Professor in the Department of Computer Science and Engineering, a fellow of the Lucy Family Institute, and a co-author of the publication.

As an expert in human-computer interaction, Badillo-Urquiola connected with families living in rural areas who needed more experience with the mobile application. “One of the things that we identified as a critical component for the success of this project was to implement a training feature to guide caretakers through all of the application’s features,” she explained.

The project’s next phase will be to analyze the collected user data and feedback from the pilot study. “There are almost 400 patients enrolled in the system right now,” said Jennifer Schnur, a graduate research assistant in the Data Inference Analytics and Learning Lab. Schnur, who is a co-author of the publication of the pilot’s results, added, “There is already a significant amount of engagement within the system, so our priority moving forward is to optimize existing features and to increase usability by leveraging artificial intelligence to integrate additional resources into the family mobile application.”

The results of the pilot study were presented in November at the Conference on Computer-Supported Cooperative Work and Social Computing in Costa Rica.

Contact: Brandi Wampler, associate director of media relations, 574-631-2632, brandiwampler@nd.edu