As smartphones, tablets, “big data” and Internet connectivity increasingly become the ever-present technologies affecting our daily lives, it's time to fully use these advancements in America's health system.
In his State of the Union address, President Barack Obama encouraged tapping into American innovation to bring cures for complex diseases through “precision medicine.” And recently, the House Committee on Energy and Commerce announced exciting next steps in the 21st Century Cures initiative—a legislative initiative that aims to modernize the process for—and accelerate the pace of—cures and medical breakthroughs. Committee Chairman Fred Upton (R-Mich.) has called the initiative a top priority for the new Congress.
Since the enactment of the HITECH Act in 2009, taxpayers and the medical industry have collectively invested more than $100 billion in an information technology infrastructure to meet America's healthcare needs. These investments hold vast potential for revolutionizing medical science, population health and cost management.
But realizing these promises requires progress on a number of obstacles, many of which are relics of a “pre-data” era.
Nowhere is the potential opportunity costs greater than in genomic medicine—a type of precision medicine that involves mapping and sequencing of genes to discover and create individualized treatments for genetically driven diseases such as cancer and diabetes.
At its core, cancer is a genetic scourge, the result of millions of errors in gene replication. This makes cancer treatment highly individualistic and dependent on each patient's genetic makeup and ever-changing environmental factors.
Gene sequencing, a relatively new technology, involves the creation of a personal database holding about 3.2 gigabytes of information for every individual. Modern data analytics can sift genetic information for enormous populations to yield valuable insights capable of pinpointing, for example, treatments most likely to succeed for an individual patient. This saves time and money, eliminates errors and reduces unnecessary suffering from the side effects of trial-and-error treatment.
With incentives, technology and data resources can be leveraged to speed treatments and cures to patients. At a recent summit hosted by the Health IT Now Coalition and the Center for Data Innovation in Washington, participants identified a number of solutions to leverage genomics, big data and technology:
- We need to invest in a modern data infrastructure. Realizing the potential of genomics and individualized medical treatments will require large investments in data infrastructure coupled with updated privacy laws. Current medical privacy laws are not in line with Americans' priorities. When it comes to data, we are falling behind in the international community. The U.S. is vastly behind China, which possesses one-third of the global genomics computing capacity and the jobs that go with it. The challenge will be to convince U.S. lawmakers that genomics is an achievable priority that deserves funding.
- Systemic efforts to digitize patient records and extract value from data suffer from a lack of interoperability and, in many cases, a lack of access to the raw genomic data collected in various research settings around the U.S. We must foster the sharing of clinical, claims, real-world and other information across systems and providers as electronic health records become more ubiquitous and more confounding.
- Technology can better electronically match patients to promising clinical trials via inclusion and exclusion criteria, speeding their results and conclusions. This would lead to the more rapid approval of new treatments for cancer and other debilitating diseases.
- Congress must update and clarify regulations to accommodate new technologies. The current regulatory risk associated with new genomic applications is restraining innovative approaches because the definition the Food and Drug Administration uses to regulate health IT was created in the 1970s.
These policies will require changes to laws and regulations that will mean engaging Congress and the administration in the near and long term. The 21st Century Cures initiative, which includes all four of these changes, points to a bright future for data-driven medicine and the millions of patients who can benefit from its use.
Fifteen years into the 21st century is high time for the U.S. to apply data-driven technologies to medicine. The gap between our current data capabilities and future data requirements is vast and growing. Suffering patients and their loved ones understand that the U.S. can and must act now to harness the potential of data-driven medicine. It is time for policymakers and private citizens alike to feel the same sense of urgency on this issue.
