From ‘No Me’ to ‘Know Me’

An arrow pointing to a starThe new Institute for Humanizing Medicine builds on the ideas and advocacy of many doctors with strong ties to the Center for Innovative Medicine — chief among them cardiologist Roy Ziegelstein, a Miller Coulson master clinician, the Sarah Miller Coulson and Frank L. Coulson, Jr. Professor of Medicine, and vice dean for education at Johns Hopkins University School of Medicine.

The Transformative Power of the Aliki Initiative

Through the generosity of Aliki Perroti, a philanthropist from Greece, the CIM’s David Hellmann, Roy Ziegelstein and Cindy Rand launched the Aliki Initiative in 2007. Its goal: to teach Johns Hopkins internal medical house officers and medical students to get to know their patients as people. Through the groundbreaking program, trainees learned that relationships don’t end when a patient leaves the hospital and that by knowing each patient as a person, evidence-based medicine can be custom-tailored for individual needs.

In a widely cited 2015 editorial in the Journal of the American Medical Association, Ziegelstein first coined the term “personomics” — making the case that in the rush to embrace the high-tech advances of precision medicine, we mustn’t lose sight of the individual patient’s unique life experiences.

In the years since that editorial appeared, the personomics concept has gained traction within the medical community, influencing physicians far and wide. CIM Breakthrough magazine checked in recently with Ziegelstein to find out how his vision continues to shape the national discussion around patient-centered care.

“The vast majority of physicians got into this field because they wanted to make a difference in the lives of individual patients.” – Roy Ziegelstein

“Personomics” is an intriguing term. What inspired you to come up with it?

The suffixes, “-ome” or “-omics” are often added to an area of human biology — witness the rise of genomics, proteomics, metabolomics, epigenomics and pharmacogenomics, for example. These high-tech fields are critical to the precision medicine toolkit. They give us a wonderful understanding of how a disease may progress in an individual patient and the unique course a treatment might take.

But what was in danger of getting lost in the discussion was that individuals are not only distinguished by their biological variability — they are also impacted by their personalities, health beliefs, social support networks, financial resources and other unique life circumstances. The same disease can alter one individual’s personal and family life completely and not affect that of another person much at all. So, I argued that these components of individuality are just as critical to patient care as any of the more traditional “-omics.”

Your editorial found a receptive audience.

Yes, indeed. It’s unusual for me to get an email response after I publish a paper, but I received many, many emails after this article appeared. They were all positive. Perhaps more important, and a bit surprising to me, is that I had expected that those who wrote would be from psychosocial fields. Instead, I was hearing from doctors from hard science fields like genomics and other related “-omics” disciplines. They said that while they believed that these “-omics” would be crucial for guiding precision medicine in the years ahead, they’d long thought that this work would need to be informed by knowledge of the patient as an individual. This was very rewarding for me to hear.

A short time later, in September 2017, I was invited to present on personomics at an international meeting of the European Congress of Internal Medicine in Milan. Then I was asked to join the editorial board of a new, international journal, the Journal of Personalized Medicine, a board on which I continue to serve today. Most recently, I authored an essay on personomics that appeared in the two-volume work The Road from Nanomedicine to Precision Medicine.

And others have taken up writing about the importance of personomics as well?

Yes. David Hellmann and I reached out to the editors of The American Journal of Medicine to see if they would consider publishing a series in their Green Journal that would invite essays from clinicians who prize patient-centered care. The idea was for essayists to provide examples of how knowing the patient as a person helped solve a diagnostic enigma, fortified the patient’s dignity, illustrated the hazards of making assumptions about people, or added awe and wonder to the daily work of a doctor. The response has been wonderful. Since the series launched in 2018, the AJM has published more than 20 essays.

Why do you think that personomics is resonating so widely with fellow physicians?

Well, I think that advances in technology have been a driving force. These days, most health care practices rely on electronic health records, which of course have many upsides. A patient’s care can be better coordinated among many different providers, for example, and data can be pooled and analyzed to drive development of personalized treatments and therapeutics. The downside is that doctors have to spend a lot of their time tethered to computers, examining lab test results and radiographic images and documenting everything.

Patients, in what some describe as a “no me” experience, can wind up feeling left out. With the advent of precision medicine, the personal nature of the relationship may be even further strained. And that’s not what doctors want. The vast majority of physicians got into this field because they wanted to make a difference in the lives of individual patients. So, I think the interest in personomics among clinicians reflects the disconnect that many doctors have been feeling — and want to fix.

What steps must be taken within the U.S. health care system to put the individual patient at the fore?

We need to start during the training years. Physicians and trainees must be taught the most effective, efficient and reliable techniques to understand each individual’s situation, including psychological, social, cultural, behavioral and economic factors — and how those factors impact the person’s experience of health and illness, as we do in the CIM’s Aliki Initiative (see sidebar).

Shifting from a “no me” to a “know me” approach does not simply improve patient satisfaction or contribute to the joy of medical practice. Getting to know our patients actually contributes importantly to identifying the correct diagnosis and optimal treatment for each individual.