It’s been more than a year since Josh suffered severe burns from a gasoline fire that ultimately brought him to the Burn Center at Johns Hopkins Bayview Medical Center for reconstructive surgery. While the toughest part of his recovery is behind him, the young adult carries scars on his neck and arms that have given him a new way of looking at life.
Josh recently shared his perspectives with two plastic and reconstructive surgery residents at Johns Hopkins — Cecil Qiu and Patrick Keller — in a powerful conversation and photo session. “His experience has given him a whole new perspective in his interactions with family members and co-workers,” says Qiu. “How they respond to him, Josh told us, offers him real insight into their character.”
Qiu and Keller plan to publish Josh’s account, with that of other Johns Hopkins patients they interview and photograph, in an online forum. The young doctors’ goal? To capture individuals’ “moments of hope, unforeseen challenges and the transformative experience of reconstructive surgery.”
The undertaking is just one of nearly a dozen “Personomics Projects” that have been funded through the Barbara and Peter K. Miller Scholars Personomics Initiative, part of CIM’s Initiative for Humanizing Medicine.
“Personomics” is a term first coined by Johns Hopkins cardiologist Roy Ziegelstein in a widely cited editorial in Journal of the American Medical Association, which launched a powerful movement at Hopkins — and beyond (see box). The central premise? In the rush to embrace the high-tech advances of precision medicine, “patients can wind up feeling left out, and that’s not what doctors want,” says Ziegelstein, a Miller Coulson master clinician and the Sarah Miller Coulson and Frank L. Coulson, Jr. Professor of Medicine. Personomics is aimed at refocusing clinicians’ attention on the unique life experiences of individual patients.
The first round of Personomics Projects, selected for funding in late 2022 and now in full swing, run the gamut — from two dermatology residents who are investigating the factors that lead patients to miss their appointments to the implementation of a “personal snapshot” to the electronic medical record, a project led by radiation oncologist Annie LaVigne, who is joining forces with journalist/chaplain Elizabeth Tracey.
“I think our discovery of this shared vision and one another has been the greatest impact of our Personomics grant.” – Annie LaVigne
Says LaVigne, “I think our discovery of this shared vision and one another has been the greatest impact of our Personomics grant.”
