Roy Ziegelstein, M.D., a Miller-Coulson Master Clinician, cardiologist, and now Vice Dean for Education at the Johns Hopkins School of Medicine, was part of the Aliki Initiative from the ground up. He was there, talking for countless hours in those very early meetings a decade ago with David Hellmann, Colleen Christmas, and Cindy Rand, and later with Janet Record and Laura Hanyok, about what medical students and residents really need to know so that they can care for their patients.
He was there when they figured out how to implement a curriculum of caring – teaching young doctors, down to a handy list of questions they could keep in their pockets, exactly how to glean the nuggets of who was lying in that hospital bed. How to learn just who that person was: What was her life like; how many medications was he supposed to take (and how many could he actually afford); did he have a way to get to the drugstore or buy groceries; was she taking care of an ailing spouse as well as herself?
Always, they told each other and taught their students, it was the person who mattered most. They quoted the great Sir William Osler, the first professor of medicine at Johns Hopkins, who said more than a century ago, “It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.”
The Aliki Initiative’s philosophy and methods are disseminating throughout Johns Hopkins and, in our graduates, beyond our walls into the community and beyond. Recently, in an editorial in the Journal of the American Medical Association (JAMA), Ziegelstein talked about these principles using a new word: Personomics. “The suffix, ‘-ome,’ or ‘omics’ is often added to an area of human biology, conveying the impression that the field is supported by hard science,” Ziegelstein says. “Given the importance of the psychological, social, cultural, behavioral, and economic factors of each person, it seems only fitting that ‘personomics’ be added to the precision medicine toolkit, and that it be used to refer to an individual’s unique life circumstances.”
He wrote the article in response to another editorial that appeared in the New England Journal of Medicine. In the NEJM piece, Francis Collins, M.D., Ph.D., director of the National Institutes of Health, and Harold Varmus, M.D., Director of the National Cancer Institute, had commented on President Barack Obama’s new Precision Medicine Initiative. They discussed the remarkable possibilities for improving health by determining each person’s individual genotypes, gut microbes, and other uniquely tailored sets of data.
Indeed, “the possibilities are almost unimaginable,” agrees Ziegelstein, who is also the Miller Scholar. “However, an important element has been left out of the discussion. Individuals are not only distinguished by their biological variability; they also differ greatly in terms of how disease affects their lives.” And this is where the Aliki approach has proven so valuable. “People have different personalities, resilience, and resources that influence how they will adapt to illness,” Ziegelstein continues, “so that the same disease can alter one individual’s personal and family life completely and not affect that of another person much at all.”
Also – a point the CIM has been making for years with its Pyramid model of academic medicine, which puts the patient and the community at the apex – “diseases do not just affect individuals; they affect their families and friends, and their communities.” All of these factors can help or hinder someone’s resistance to disease and response to treatment. “The influence of the unique circumstances of the person – the “personome” – is just as powerful as the impact of that individual’s genome, proteome, pharmacogenome, metabolome, and epigenome,” Ziegelstein argues.
Because residents as well as community physicians now must log so much time at the computer, working on government-mandated electronic medical records, they often get to know the virtual patient – the one whose lab values and CT scans they’re reading on the screen – better than the actual, flesh-and-blood man or woman sitting just a few feet away in the clinic or hospital room. “The paucity of time spent with the patient, coupled with an overreliance on imaging and laboratory tests, has eroded history-taking and physical examination skills,” Ziegelstein writes.
Also, most medical schools don’t really teach students about real-life variables such as behavioral, cultural, or financial issues. These might include a patient’s ability to pay for prescription drugs or physical therapy; the availability of fresh groceries for a better diet, and cultural impetus to choose healthy foods over soda and chips; a safe place to exercise and the opportunity, and desire, to do it.
“The importance of understanding each patient as a person is as critical…as anything else in medical school or residency training,” notes Ziegelstein. “It is not simply that it improves patient satisfaction or contributes to the joy of medical practice, it actually contributes importantly to identifying the correct diagnosis and optimal treatment for the individual patient.”
Knowing the person is just as essential as understanding the patient’s molecular biology and genetics. “The potential of pharmacogenomics to allow health care providers to prescribe the right drug at the right dose to the right patient matters only if this treatment is available at the right pharmacy at the right price so that it will actually be taken in the right amount on the right day at the right time.”
The take-home message, in an age where medical technology grows more sophisticated than anything we could have imagined a few decades ago, is that it won’t ever be truly personalized medicine if the doctor doesn’t have any idea who the person really is.