Zackary Berger and Dave deBronkart: “Precision medicine” needs patient partnership

zack_bergerdave_debronkartUS President Obama recently presented the outlines of a US$215 million plan for “precision medicine” through support of research funded by the National Institutes of Health and National Cancer Institute. Presented as “healthcare tailored to you,” it would take into account “individual differences in people’s genes, microbiomes, environments, and lifestyles—making possible more effective, targeted treatments for diseases like cancer and diabetes.” A follow-up meeting is planned at the White House.

Absolutely. But let’s not forget there’s more to a person than their physical selves: people have preferences, and their values vary. We assert that the ideal treatment is personalized to both our cells and our selves.

Suppose a newly developed test reveals that two people—perhaps even identical twins—have a particular genetic trait that can be treated with traditional methods, or with a new precision treatment that extends life expectancy by five years but has unpleasant side effects. Which should each choose? It seems clear that only the individual can say. Innovating new treatments is laudable but misguided unless patients identify what is at stake for them and what they prefer. Only the patient as a person—independent of her molecular makeup—can make that decision. As opposed to “personalized” medicine (a frequent synonym for genomic medicine), this can make care truly personal.

The field of shared decision making established long ago that people like to be involved in their care decisions, and when they are, it improves self-management, satisfaction, medication adherence, and even, possibly, better physical outcomes—the expressions of the self, as it were, affecting its own cells. We see no reason to expect the same won’t apply just as well to precision medicine.

Only through shared deliberation by patient and health care provider does “precision medicine” become personal. Innovating new treatments is laudable but misguided unless patients identify what is at stake for them in current treatment gaps. Precision genomic research falls short of its potential if the risks and benefits of gene therapies aren’t in accord with the patient’s priorities.

A recent discussion paper from the US Institute of Medicine, of which one of us (Zackary Berger) was a co-author, proposes ways to encourage such shared decisions. Doctors, patients, institutions, insurance providers, and government need to work together. We need to set standards for shared decision making (to know when patients are being included, and hold doctors and hospitals accountable), certify decision aids to make sure they are based on the best information and patients’ best interests; improve health information technology to make sure patients can get to the records in which their “precision” data is discussed; and expand financial investment in patient involvement.

Thus, in precision medicine, complicated genetic information must not be presented as a fait accompli, but in the context of the patient’s decision making. For this to happen, we need to go beyond the Institute of Medicine paper and change the entire culture of healthcare. SDM is no longer merely a curiosity of avant-garde patient-centrists, but the realization of a central principle: the patient, always and everywhere, should be in charge. For that to happen, funding, and institutional wherewithal, needs to mandate that the patient be involved in every decision to the extent of his or her ability and desire, incentivizing healthcare providers and payors to make this a reality. The push to increasingly precise, individualized treatments must not overlook that there’s more to a “best treatment” than the genome and the biopsy. Since science, no matter how advanced, always leaves room for uncertainty, and patients are people, not genes, their preferences must always come first.

As President Obama encourages precision medicine, he should support recognition of patient preference, and involvement in decisions, as part of this initiative, to ensure that “precision” medicine is not just “personalized” but personal. We say: blend the nuance of self with the nuance of cell.

Zackary Berger, is assistant professor of medicine in the division of general internal medicine at Johns Hopkins School of Medicine in the US and the author of Talking To Your Doctor (Rowman and Littlefield, 2013). He is writing his second book about bridging doctors’ guidelines and patients’ preferences.

“e-Patient Dave” deBronkart is a stage IV kidney cancer survivor and advocate for “participatory medicine,” in which patients are active partners with the medical system. He will be visiting professor at the Mayo Clinic in Minnesota, USA, in March.

Competing interests: None declared.