When Johns Hopkins cardiologist Roy Ziegelstein coined the term “personomics” in a widely cited editorial in Journal of the American Medical Association in 2015, he launched a movement that has gained momentum — at Johns Hopkins and beyond — in the years since.
His premise? In the rush to embrace the high-tech advances of precision medicine, too many doctors can lose sight of the individual patient’s unique life experiences. “Patients, in what some describe as a ‘no me’ experience, can wind up feeling left out, and that’s not what doctors want,” says Ziegelstein.
To address that disconnect, a new Johns Hopkins initiative is funding residents and fellows across a diverse range of specialties to lead “transformative projects” aimed at developing skills “in the science and art of personomics,” explains Jessica Bienstock, senior associate dean for graduate medical education.
When her team put out a call for proposals, they were heartened by the scope of projects that trainees put forth. Ultimately, seven “Personomics Projects” were funded through the Barbara and Peter Miller Scholars Personomics Initiative this first year.
In one initiative, a photojournalism project, plastic and reconstructive surgery residents Cecil Qui and Patrick Keller plan to follow 12 patients over two years, with the aim of placing the patients’ reconstructive surgeries “in the context of their larger medical journey, their day-to-day lives and their personal identities.”
The duo, both amateur photographers, will also conduct interviews with the patients and their surgeons. “Through these interactions, we will highlight moments of hope, unforeseen challenges and the transformative experience of reconstructive surgery,” note the trainees, who ultimately aim to share the photos and interviews in an online publication viewable by staff and the public.
A second study is aimed at identifying the factors that lead to patients failing to show up for medical appointments. Too often, note dermatology residents Eugene Park and Angel Diaz, “no-shows often remain nothing more than meaningless names on a screen … and we often fail to register that in each of these cases, there is a real human who at one time sought our help, with his or her own struggles, needs and obstacles.”
Through standardized surveys and interviews, the residents aim to aggregate common reasons that lead to “no-shows” — such as transportation issues, language barriers or child care needs — and ultimately identify measures to prevent missed appointments in the future. “There may be worlds of empathy to gain from these patients we never know,” write Park and Diaz in their proposal.
Bienstock notes that there’s an additional, crucial element of the personomics initiative. “We’ll be creating a ‘community of practice’ — a learning collaborative of Barbara and Peter Miller Scholars who are passionate about getting to know patients as people,” she says. The scholars will meet monthly for skill building and peer mentoring workshops, providing ample opportunity for networking and collaboration.
“People generally go into medicine because they care about relieving suffering and about connecting with patients to help guide them through some of the most vulnerable times of their lives,” she says.
“But during medical school and residency, there’s so much to learn and so much time pressure — time spent getting to know your patients can easily get buried under all the other pressures. One way to combat burnout is through connection with meaning and purpose. And the key way to make these connections with meaning is through having the time to get to know your patients.”
