By Gillian Hayes, University of California, Irvine, FitBaby Principal Investigator
Last week I got one of those emails you hope never to get. A young child, a participant in a former study, had passed away. I don’t know the medical details of her death, but I do know the child had a severe infection. She was sent home from the hospital with the hope that she had only a small infection, and her parents were instructed to bring her back only if she began to pass blood.
Commonly seen at any hospital, the available resources are continually constrained, and often those children who do not seem to be the sickest are sent home with medication to rest and recover away from the kind of powerful monitoring equipment and medical expertise available at the hospital, sometimes with devastating consequences. Further complicating the situation, research would suggest that the parents, not native English speakers, most likely had difficulty in communicating with the physicians about their daughter’s condition.
Unfortunately, this is not the first time I have experienced the death of a research participant. During my doctoral work, a child enrolled in one of my studies had a fatal heart complication. The videos we took of her for our research are some of the last images of her alive. There have been other heartbreaking events during my research since. This is only the latest, but I am sure not the last.
To the medical researchers and clinicians reading this blog, perhaps these life experiences are familiar. Sadly, every day, in hospitals and homes around the world, patients are dying. For me, however, as a professor in Information and Computer Science, these experiences can be a bit jarring—particularly when I compare them with the kinds of everyday experiences my colleagues have with participants in their studies.
As sad as these events can be, however, they serve an important purpose. They remind me why we are doing what we are doing. As designers and inventors of new technologies, we may not be creating the next great vaccine or finding new therapies for stem cells, but in our own way, we are creating tools to help heal. It is my sincere hope that infants and toddlers like the one who recently passed will not be sent home from the clinic with assurances of a quick recovery if all of the information we are collecting and sharing is available to the parents and their physicians. I hope that more information and more empowered parents can improve communication with providers and that those providers will listen, incorporate this information into their practices and at the end of the day, patients will receive better care.
Comments