In 2023, Manne Research Institute introduced Health@Home, a research hallmark initiative focused on home healthcare delivery for children. Directed by Carolyn Foster, MD, MS, Health@Home is using research-based evidence to transform how we provide healthcare outside the walls of Lurie Children’s. Health@Home is developing, evaluating, and implementing digital healthcare tools and devices for in-home use, conducting research and clinical trials, and partnering with internal and external collaborators to share expertise and resources. I am excited to share how Carolyn, program manager Leah West, the Health@Home team, and her collaborators leverage digital technology to better support patients with complex medical conditions and their families in the in-home care setting.
As care at centers like Lurie Children’s advances, so does the number of children with medical complexity—children who have at least one complex chronic condition as a result of prematurity, a genetic condition, a birth trauma, or an accident. These children often live with functional impairments, require medical technology, and need a high level of care while living at home and attending school. Novel digital technologies have a large potential impact on these children and their families; the key is ensuring that these technologies are effective and drive quality and value, not only in the hospital and clinical realms but also in the real world. That’s where research and development methods and rigor come into play. Carolyn notes that most children with medical complexity spend the majority of their time at home outside of hospitals and clinics, which is why the Health@Home initiative emphasizes that it is not just about creating novel digital healthcare products, it is about making sure that the creators have the users in mind and that the end products are thoughtfully designed for a diverse group of families: “Even if you have a great device or app, if you do not include the users in the design, you are probably not going to get it right.”
One aim of the Health@Home initiative is the enhancement of our partnerships with the private sector to create opportunities for rigorous user-centered design testing. Ongoing support from Smith Child Health Catalyst and the research institute’s Innovate2Impact (I2I) program helps the Health@Home team unite Lurie Children’s experts with external companies working on digital healthcare projects. Collaborating with Lurie Children’s kidSTAR Simulation Lab has proven instrumental in connecting our researchers with companies to run simulations of user-ability testing of medical devices to generate a sense of how well the device performs in a simulated home environment. The Health@Home initiative is also leveraging the innovation expertise of two of our internal teams—the quantitative science pillar and the Consortium for Technology & Innovation in Pediatrics (CTIP)—to address pediatric home medical device design needs.
Years ago, children with medical complexity often did not survive, but advances in healthcare have changed this. As she reflects on how the day-to-day care for these children has shifted to families, Carolyn recognizes that providing care is a longitudinal experience for them, explaining we collectively have an obligation to not only design and develop technologies to save lives acutely but also to support and improve quality of life in the chronic care model. The Health@Home initiative, I2I, Catalyst, and CTIP come together to offer a range of resources and expertise to support research, foster industry partnerships, and inspire design and development efforts in digital home healthcare. If you are interested in research to support digital technology for home healthcare, have identified a challenge in home healthcare, or are just curious about digital technology innovation, I encourage you to connect with the Health@Home initiative, I2I, and CTIP teams.
