It was fascinating to hear two healthcare industry leaders present on the topic of personalized medicine on June 15, at the Health IT Summit in Boston, sponsored by Healthcare Informatics. John Halamka, M.D., the CIO of Beth Israel Deaconess Medical Center (BIDMC) in Boston, and Kristin Darby, CIO at the Boca Raton, Florida-based Cancer Treatment Centers of America (CTCA), share information and insights on developments taking place at their respective patient care organizations; Dr. Halamka also shared extensively from recent personal experiences on the part of himself and his family. The co-presentation reminded me that how we’re framing the entire topic of personalized medicine is in considerable flux right now, with a fair amount of uncertainty, based on a range of variables—policy, strategic, clinical, care delivery process, and information technology-based. This really is an area whose future could take one or more paths at once, some of them rather vague and complex right now.
To begin with, as Darby noted, even the terminology around this sphere of activity is muddled and confused. Two terms—“precision medicine” and “personalized medicine”—are used in many different ways, by many different people. They denote similar, yet different phenomena. “Personalized medicine and precision medicine are terms that are often used interchangeably,” she told the Health IT Summit audience. “But there is a difference. Precision medicine focuses on the specific needs of a patient and their known response to specific biomarkers. Patients typically go through genomic testing, and the results are tested based on known biomarkers, and their treatment is then adjusted. Meanwhile, personalized medicine can include precision medicine as one of its components, but also includes such things as lifestyle, patient preferences, and the patient’s lifestyle.”
Darby went on to say that, “As you start to look at the value of precision medicine—historically, prior to this, the approach has been population-based, with the same approach for everyone, and only a certain percentage of those approaches working. And when it comes to oncology, those approaches kill healthy genes as well as diseased genes. But with personalized medicine, you take into account elements important to the patient. And it also includes looking at lifestyle and other factors that can really help the patient individually.”
Darby went on to share a case study involving a patient who had had a terrible experience with conventional treatment of her metastatic ovarian cancer, but who, once she came to Cancer Treatment Centers of America, ended up having a precision medicine experience that was not only far better on an experiential level, but also made use of advanced genomic testing that ended up identifying a therapy that could target a specific genetic mutation, and which led to the eradication of her cancer.
Meanwhile, when it comes to personalized medicine, there really is some uncertainty as to actually how to do it, in a practical sense. Before sharing some advances that are taking place around the emergence of personalized medicine at Beth Israel Deaconess, Dr. Halamka began by sharing two complicated personal narratives, around his wife’s health, and then around his own. In his wife’s case, she was able to leverage a mobile app from BIDMC, and communicate with her primary care physician, and get a referral for lab tests, which ultimately led to a diagnosis of Grave’s disease, and treatment for it.
And then Dr. Halamka shared information about his own experience, which involved an eventual diagnosis of atrial tachycardia. He explained a series of interactions with his physician that ended up putting him on a very low dose of iltoprylol every day. Referencing Donald M. Berwick, M.D., CEO of the Institute for Healthcare Improvement (IHI), Halamka said, “We can’t do a clinical trial on everything, Don Berwick says. Sometimes, we just have to make good judgments. My wife is Korean, and we did her sequencing. The ultimate irony is that she’s BRACA-1 negative, and I’m BRACA-1 positive. So obviously, I didn’t give it to her.” Meanwhile, he said, “Our daughter is BRACA-1 negative, which is great. And we looked at the Harvard corpus of data, and we found that Asian women are very sensitive to Taxol—neuropathy is a huge issue. So looking at the history of Asian women, we divided my wife’s dose in half. We didn’t have empirical evidence, but we looked at anecdotal evidence. And five years after diagnosis with breast cancer, the end result, after a half-dose dosage of Taxol, is that she’s been cancer- free with no recurrence.”
The key point, Dr. Halamka said, is that “[W]e’ll move forward with precision medicine using the Internet of Things and interactions between physicians and patients,” as he summarized how clinicians and patient care organizations will evolve forward to use pieces of information and knowledge and various technologies, to ultimately create personalized medicine delivery for patients.
In other words, however healthcare leaders choose to define the concept of personalized medicine in principle, in practice, the fact is that there are many layers and dimensions of practical process that will have to be worked out under the heading of the concept of personalized medicine. And is that really such a bad thing, after all? No, it is not.
But it is complex. And as expanding genomic research meets more intensive care management of patients living with cancer and other very debilitating diseases, it will be fascinating to see how the leaders of patient care organizations reshape care delivery around the emerging realities. Mobile technology, clinician-patient messaging, consumer-facing apps and devices, and even OpenNotes, will all be elements in this new landscape.
So this whole area will provide yet another opportunity for healthcare IT leaders, as the healthcare system moves forward to authentically rework patient care to make it truly personalized. It’s going to be an exciting, challenging, at-times-confusing, next several years. But if Kristin Darby and John Halamka are right, we’ll be able to look back on this time period as an important one in the forward evolution of patient care that is truly patient-centered after all.