By Melissa Stevens
April 25, 2019 at 5:00 am ET
President Donald Trump’s recent call for Congress to replace the Affordable Care Act with a more-effective, less-expensive alternative highlights the need for a national policy and investment road map that will lead to lower-cost preventative care for Americans.
His subsequent decision to delay action on the ACA until after the 2020 election underscores the incredible difficulty in overhauling a complex system that defaults to the most-expensive option — treating patients after they become ill — while ignoring cheaper, holistic health care strategies that could keep Americans from getting sick in the first place. If health care cost less, the nation would be healthier, and political compromises would be easier to reach.
Our current approach of treating patients after symptoms appear has made the U.S. health care system the world’s most expensive, with treatment costs rising to $3.5 trillion in 2017. Despite paying more, Americans suffer from preventable diseases and health complications at higher rates than the residents of most other developed nations. We consistently pay more and get less.
Given adequate political and financial support, emerging technologies will enable the United States to make the transition from sick-care to well-care and save money in the process.
Precision health — the use of tools such as genomic sequencing and digital technologies to prevent disease — is emerging as a cost-effective alternative to the current practice of treating sickness. Precision health involves the detailed analysis of personal health information — genetic factors, culture, diet, physical environment and lifestyle — to determine an individual’s susceptibility to disease and to prevent the disease from developing in the first place.
The popularity of health-monitoring apps, wearable technology and direct-to-consumer testing demonstrates the potential of technology to help people feel better and live longer. The early success of startups such as Omada that are beginning to employ precision health approaches to head off diabetes in patients with high susceptibility indicates the market’s interest in the field. These products and services only hint at the possibilities. If we lay the right foundation to foster precision health, we can save lives and put a dent in health care costs.
First, we must develop the science, create appropriate policies and change how we interact with the health care system.
The necessary research will require community coordination, large populations and large-scale investment. Vast datasets must be collected to establish objective baselines to define what “health” means at various stages of life and to determine how to prevent illness with more precision. To make the data meaningful, we will need to create standardized tools to measure factors such as physical activity, diet and environmental influences.
The National Institutes of Health’s “All of Us” project contributes to a future knowledge-base for precision health by collecting information from 1 million Americans to illuminate the impact of genomics, environment and socioeconomic status on health. The NIH should continue to prioritize programs such as All of Us and increase funding for targeted disease prevention research. The National Science Foundation should play a key role in developing new computational capabilities and infrastructure to support the management of large scale, personal health data.
Private-sector efforts are also invaluable. Project Baseline, led by Verily, aims to collect information from 100,000 participants to characterize how individual health data changes over time. MyCode is a Geisinger initiative to assess genetic information to inform individual care and provide insight into long-term patient health.
In addition to marshaling money, we need to create an environment where precision health can flourish. For instance, smart policies can incentivize the development of professional and industry standards.
In 2016, the Food and Drug Administration said it does not intend to regulate fitness trackers and health-monitoring apps. However, this position may lead to variations in quality and a loss of consumer and physician confidence. The FDA should develop guidance for data quality where these tools are being applied to predict disease or monitor health in a medical setting.
The development of precision health science warrants the re-examination of existing legislation to ensure that we enable the modernization of our health care system. The Health Insurance Portability and Accountability Act governs the privacy and confidentiality of patient information, and the Genetic Information Nondiscrimination Act prevents employer and insurer discrimination against people with a genetic predisposition to disease. These measures are essential, but greater awareness is required to implement them effectively.
For example, as few as half of providers are aware of GINA’s protections. Also, GINA should be amended to provide more protections to individuals with genetic illnesses or genetic predisposition to disease to give patients the confidence they need to seek genetic counseling and incorporate it into their health plans. There is no place for genetic discrimination in a system that promotes precision health.
Other challenges impair efficient collection of data. Misinterpretation of HIPAA leads to providers overly protecting patient information, sometimes inhibiting communication between medical providers.
It may also prevent the sharing of patient data for research and patient care, which is essential to realizing the potential of precision health. In contrast, health data not collected in a health care setting, like activity tracking, is valuable, but HIPAA does not protect these data, and pairing them with medical record data is difficult.
As our data types and needs evolve, laws and policies will require adjustment to ensure privacy and security while facilitating sharing. The needs of aging boomers justifiably drive much of the national conversation today.
However, as we move toward an era defined by increased connectivity and technological integration, precision health holds even greater promise for future generations. One thing is beyond debate: Precision health technology is poised to play a key role in the reform of our unsustainable health care system.
Melissa Stevens is the executive director of the Milken Institute’s Center for Strategic Philanthropy.
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