"Personalized" Health Care
In his State of the Union address in January, President Obama proposed a federal research initiative that would lead to “a new era of medicine- one that delivers the right treatment at the right time”. A recent statement from the Food and Drug Administration expands on this concept. “…Personalized medicine (also known as precision medicine) may be thought of as the tailoring of medical treatment to the individual characteristics, needs, and preferences of a patient during all stages of care, including prevention, diagnosis, treatment, and follow-up”. Most proponents of this concept focus on achieving personalized care through genomics. For example, a recent definition from the NIH states that “Personalized medicine…uses an individual's genetic profile to guide decisions made in regard to the prevention, diagnosis, and treatment of disease”.
In a 2007 editorial, Burke and Psaty reminded us that personalized medicine comprises more than genomics alone. “Genuinely personal health care, as practiced by physicians for centuries, is based on the relationship between patient and physician rather than on any particular technology”. Still other commentators suggest that “N of 1” clinical trials, comparative effectiveness research or shared decision making are all ways to preserve the individual as the focal point of health care decisions. Why are so many different disciplines trying to claim this concept? Can they all be right?
The philosopher Ken Wilber proposes that human knowledge derives from four complementary perspectives: the individual self and consciousness; the “intersubjective” realm of human culture and relationships; the physical, natural and behavioral sciences; and the social systems and environment in which we live. He also points out that most scholars claim primacy for one of these perspectives, even as they engage all of them in their daily lives. Wilber’s “integral” perspective helps me untangle the claims about personalized, precision, or individualized health care, and see how they may actually require each other.
Analysis of genomic information, rich clinical data, or social and environmental information to understand an individual’s health concerns and needs all approach the individual “from the outside in”. They start with what is measurable in the natural sciences, in electronic health records, or in our rapidly growing datasphere, then build models and make predictions that progressively approximate the individual perspective. In contrast, an individual who declares his or her preferences and clinicians who develop strong relationships with their patients can personalize care “from the inside out”, focusing on information that is subjective and nuanced but less easily measurable.
When we try to keep all four perspectives in view, the limitations of each become apparent. Individual preferences or the recommendations of clinicians should be informed by evidence from the biological, behavioral, social and environmental sciences. Predictions from genomic or comparative effectiveness studies about the best drug for a specific disease should pass through the filter of the clinician’s experience and the patient’s goals. Even an exquisitely targeted treatment won’t work if the patient won’t take it or can’t afford it, or if the doctor doesn’t recommend it.
In the Institute for Health Research, we pride ourselves on conducting research within an integrated delivery system. The concept of personalized medicine challenges us to broaden our definition of what truly integrated care should be. Can we provide care that honors the individual, promotes strong clinical relationships, collects and applies information from the genomes (and all the other “omes”) of our members, link that information with clinical and behavioral data in our electronic health records, and augment that with a deep understanding of the social and environmental context that shapes the health of our members? That’s a challenge worth accepting.
Investigators in the IHR, other KP and HMO Research Network research departments, and our academic colleagues are all asking these questions. In 2015, IHR investigators will begin to recruit volunteer KPCO members into the national KP Research Bank, which will store information about their genomics, clinical care, family history and behaviors, and ultimately use that information to test new interventions to guide care decisions. Our research departments are nationally recognized for observational comparative effectiveness studies and pragmatic clinical trials that exploit the richness of our clinical information. IHR researchers are evaluating programs to promote health in communities and schools, outside the walls of our delivery system. We are conducting studies that deepen our understanding of the social forces - food insecurity, racial, ethnic and social disparities, insurance coverage and cost of care – which shape how patients live their lives and use the health care system. We are including patients as team members in our research so that we never drift too far from their priorities.
We should view anyone who tries to claim personalized medicine as the exclusive domain of a single discipline with a bit of skepticism, but a larger measure of compassion. They are all onto something, but truly personalized care is a bigger concept, and a more worthwhile goal, than any of their agendas.
John F. Steiner, MD, MPH