Millennials will be the first generation not just of Americans, but of human beings, to enter their golden years without having to fear cancer.
That, at least, is the driving ambition behind the Precision Medicine Initiative, which President Obama calls his “moonshot” project.
The now-popular term “moonshot” (even Google has used the term as part of its new business plan and structure) refers to President Kennedy’s famous directive, challenging the nation to put the first man on the moon. Kennedy was killed before he could see that dream realized, but it has since become shorthand for any project or undertaking that seeks to defy the odds and redefine what is possible.
It is not exactly a tradition among presidents to take aim at their own “moonshot” project while in office, but Obama has repeatedly drawn the comparison between curing cancer and landing on the moon. First announced in his 2015 State of the Union address, Obama recently hosted a summit on the Initiative at the White House, just after the first anniversary of the original unveiling.
Besides addressing the highest aim of the project (curing cancer) the President and his guests at the summit highlighted how the PMI’s success goes beyond a single disease category, or even the impact of Kennedy’s original moonshot.
It would certainly be exciting if the cure for cancer were developed in an American hospital—just as the first human on the moon was an American astronaut—but the nature of such a breakthrough would mean much more than another source of nationalist pride.
Medicine, historically, works a lot like democracy: majority rules. That is, whatever drug, treatment, or procedure seems to be effective for the largest cohort of patients, is generally held to be a best-practice. Every time a new drug is developed, a standard average dose is recommended for it. This kind of generalized approach to medicine naturally ignores the great deal of nuance and variety that actually exists among the population. As a result, even best-practices tend to involve a lot of trial and error.
Precision medicine—often known as personalized medicine—looks to turn that equation on its head. Rather than one-size fits all medicine, precision medicine adapts treatments, medications, the whole spectrum of care to each individual. Taking into account genetics, personal history, and even patient preference, the idea is to cure disease and ailment at the genomic level, rather than just throwing a generic best-practice at a standard diagnosis and hoping the patient is part of the population that responds positively.
That bit about patient preference is especially important, because making precision medicine a reality requires more than the expertise of genetic researchers.
“We have a direction here, and a trend, where the patient is going to be more in control of their healthcare; where things are not delivered in silos on an episodic basis to patients, where the focus really is on shared decision-making,” explains Carl Nelson, associate professor at Northeastern University and an expert on health management.
Traditionally, the overwhelming expectation in the field of medicine has been for patients to defer to their physicians. While the PMI does not aim to dethrone clinicians as recognized experts in their fields, it does put the onus on patients and clinicians both to recognize they have a role to play in achieving better healthcare.
Getting this movement underway starts with a rather unfortunate-sounding buzzword: data-gathering.
But far from some sinister, anonymous snooping system that tracks citizens across social media, the PMI is aiming for volunteers to contribute their genomic data to a massive, million-strong pool. This genomic pool will form the basis for ongoing research aimed at honing in on what specific genes are implicated in cancer.
Fortunately, studies show that regardless of whether patients are digital natives—Millennials who grew up in a world of smartphones, WiFi, and social media—or Baby Boomers, they are receptive to the idea of sharing their personal health data. As clinicians and researchers are learning, giving patients an explanation of how their data will be used, and the impact their contribution can make, is an effective incentive for patients to give consent to sharing everything from a map of their genome to a simple record of treatment.
The importance of data-sharing bleeds right into another historically contentious issue in healthcare: data ownership. Clinicians have long been responsible for gathering and storing the personal health data of their patients. When you go to the doctor and fill out a health history form, you may or may not get a copy to keep; when your doctor provides a consultation, the documentation for that whole visit goes into a proprietary medical record. Should you be admitted to a hospital, they will have to ask your doctor to share those records to help inform your treatment—and there is no guarantee they will be shared in time to influence your care.
The PMI changes the nature of medical records. More than just a history of encounters at the doctor’s office, these will include a detailed family medical history, a map of the patient’s genome, and indicators that signal the risk of various diseases, drug allergies, or susceptibility to complications. Making this information truly valuable entails giving patients the power to personally own that information, and then choose to share it with any care provider.
In this way, patients are more than just medical subjects—they become partners to their own treatment. This new level of engagement is important to realize cost-reduction and nationwide savings on healthcare spending.
“One of the neat things about healthcare, is we’re all engaged,” remarked Nelson. “We’re engaged as children, as adults, as parents, as caregivers for our older parents, and ultimately as professionals, and we’d all like to improve on [any] faults, to eliminate waste and inefficiency wherever possible, to achieve better outcomes.”
In this sense, the cure for cancer ultimately isn’t just a scientific breakthrough, but a change to how a whole population thinks and behaves toward healthcare. More data can only come from more participants, and better care can only come from more partnerships between clinicians and patients.
Much like visiting the moon, precision medicine is hardly a new idea—the human genome was first successfully mapped in 2003, after all. But having the White House put its weight and resources ($215 million in the 2016 fiscal year) behind it may help bring not just the financial support, but the public interest needed to change the game.
Precision Medicine puts Big Data to use in the context of healthcare, and takes aim at one of humanity’s most resilient threats: disease. Like President Kennedy’s original moonshot, President Obama is previewing the next major intersection of American life and scientific discovery.