Not so long ago, I was speaking with a former colleague who served as President Clinton’s domestic policy advisor for health care who worked on Clinton’s health care reform efforts in the early 1990s. In response to a statement about the transformation of health care, he responded (and I’m paraphrasing) “I’m not sure we can transform health care. The best we can hope for is a faster evolution.” It seemed at the time he was right, but in hindsight, nothing could be further from the truth.
Today, health care has moved from incremental evolution to wholesale accelerated transformation, and data are fueling the change.
While discussions about overhauling health insurance and care delivery over the last several years have taken place within the context of the Affordable Care Act, there have been other, significant, but hidden changes occurring that have the potential to transform health care. These advances are being driven by the massive volume of data now available to researchers, scientists, doctors, and population health experts.
For many drug developers and disease researchers, these data started to become available with the decoding of the human genome. Since that time, medical researchers and pharmaceutical companies have expended significant energy and money pursing breakthroughs based on genomics. As with the early adoption of most new protocols, the results did not always equal the hype. In fact the idea that during the last six years we wasted a lot of time on genomics is a common belief among many. Maybe, but outside of the public spotlight, researchers learned to work with the data, investigations continued and, as a result, highly personalized medicine is progressing rapidly.
More important, now that an individual’s genome can be decoded, often for as little as $1,000, researchers potentially have access to the genomic data of millions or potentially billions of people—far beyond the thousands that have been decoded to date. As the price drops further it may become commonplace for every child to have his or her genome sequenced at birth as a way to identify and mitigate risk factors for disease and disability. That “diagnosis,” and the inevitable gene and cell therapy that will be developed will result in treatments that did not exist a generation ago and can only be considered revolutionary rather than evolutionary.
The other area of big data that will soon affect health care is the product of Electronic Medical Records (EMRs). With the Obama Administration’s efforts to force EMR adoption through the HITECH Act, doctors, hospitals and other providers will soon be gathering large amounts of data on patients, their illnesses and treatments. That information can and surely will be analyzed in new ways. When aggregated across the population, such data will exert tremendous influence on everything from care protocols and insurance product development to hospital design and, ultimately, the cost of and access to care.
While it is clear that big data is changing health care, patients must remain at the center of the health care equation. They must have control of their data if for no other reason than because health care is a deeply personal experience. That isn’t about to change. Transformations in health care are happening faster than society’s ability to internalize and reconcile them with long held personal and cultural beliefs. Retaining control of where one’s data goes, and how it is used will help patients understand and support health care’s accelerating transformation.
The transformation in health care driven by data and the effect it is having on the “art of medicine” is no longer open to question. What continues to evolve slowly is our understanding of the myriad implications and opportunities inherent in these changes. In that regard, my friend may have been right, up to a point.
Our ability to benefit fully from health care’s inescapable transformation is measured only in our own ability to evolve through increased understanding of its formerly unimaginable possibilities. If we cannot keep pace, incremental evolution will indeed be the order of the day.