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By rights, the American population should be the healthiest in the world. The United States is a world leader in advanced medical technologies and practice. Its citizens spend almost twice as much on medical care as citizens of other developed countries.1 Yet this extraordinary investment pays a poor return when it comes to citizens’ overall health. United States ranks 26th in life expectancy, 31st in infant mortality, and first in the incidence of adult obesity out of the 34 OECD countries.[1]
What’s behind this extraordinary waste of resources? Poor use of health information-- false health beliefs combined with non-scientific use of health data--is a substantial root cause. For example, it makes sense to most Americans that more medical care is better care; most believe that controlling consumption of medical services amounts to “rationing.” More care may help to treat illnesses for which there are well-defined solutions. Yet only 15 percent of the $500 billion Medicare spends annually goes toward “effective” or “necessary” care: treatments that provide benefits that substantially outweigh their risks[2]. Moreover, each medical contact increases the likelihood of medical errors, false positive diagnoses that can expose patients to risky treatments, or the unproductive use of limited resources. As Dartmouth Professor Gilbert Welch recently asked in the New York Times: “Isn’t it time to learn which practices, in fact, improve our health, and which ones don’t?”[3]
While Americans struggle with the abundance and complexity of existing health information, a tsunami of new information is reaching its crest. Twenty years ago, revolutions in biotechnology and information unleashed an earthquake of new bioscience and medical data— DNA sequences, RNA expression levels, protein structures, epigenetic markers, structural and functional images of the brain, and other “big data.” This wave of information represents both a challenge and an opportunity.
Creative use of the emerging biological data can unravel the mysteries of an individual’s health and disease. These data can help us to understand what distinguishes one person from another and to tailor prevention, diagnosis and treatment to improve health dramatically. By allowing us to manage health and disease on an individual level, this emerging data can also reduce the waste in our current health expenditures.
The goal of the Johns Hopkins individualized Health Initiative or “Hopkins inHealth” is to develop and disseminate tools that facilitate the intelligent use of existing and emerging information to individualized health and health care. Toward this end, Hopkins inHealth will discover how best to define, measure, and communicate each person’s health state and the trajectory along which it is changing, and use these measurements to guide that trajectory in ways that enhance health and quality of life.
A compelling example involves screening for common cancers. By integrating population data about the age and risk factor-specific prevalence rates with personal data on family history and other factors, we can individualize each person’s cancer screening protocol. Doing so increases the chance of detecting the cancer early, while minimizing the risk and costs of false-positive screens and inappropriate invasive tests or treatments. Each person’s risk of developing one of the major cancers is unique; therefore, each should have a unique screening algorithm. In addition, Johns Hopkins and other institutions are developing new genomic and epigenetic screening tools. These tests will generate a new kind of information that can further individualize detection and treatment, then substantially increase savings over the coming decade.
Through the inHealth Initiative, three Johns Hopkins Institutions — the University, Johns Hopkins Health System, and the Applied Physics Laboratory — will combine their assets to demonstrate how to use health information effectively to make world-class, affordable health a 21st- century American reality. They will first demonstrate the value of a new information-based strategy in populations managed by the Johns Hopkins Health System. They will then share the approach with the much larger Department of Defense and Veterans Administration populations via the Johns Hopkins Military and Veterans Health Institute. These efforts will lead the way forward for society as a whole.
Johns Hopkins is uniquely qualified to discover, implement, and disseminate information-based solutions to key aspects of the American health crisis. Collectively, the Johns Hopkins Schools of Public Health, Medicine and Nursing comprise the best academic health institutions in the world. Faculty in Johns Hopkins’ schools of Engineering and Arts and Sciences, and scientists at the Applied Physics Laboratory bring world-class expertise in statistics, applied mathematics, computer science, and systems engineering. Johns Hopkins has a strong tradition of entrepreneurial faculty seeking solutions to societal problems. The Johns Hopkins Health System, rated among the best in the United States for more than two decades, is poised to innovate by testing information-driven, individualized health tools. It has 275,000 health-plan members with whom health decision-support tools can be implemented and continuously improved. The Applied Physics Laboratory (APL) is an internationally renowned leader in designing and engineering information-systems to solve complex problems. APL will disseminate Johns Hopkins inHealth advances to the Department of Defense, for whom it serves as a trusted agent, expanding the utility of Johns Hopkins discoveries to the country as a whole.
Hopkins inHealth is ambitious. It is our plan to lead, from the inside out, a transformation toward intelligent use of health data in the American health care system. It starts with the individual – empowering each person to use information, including emerging, complex data, to take full responsibility for his or her health and healthcare choices. Hopkins inHealth also has sharp focus. The initiative will create and continuously update a list of the top ten targets necessary to advance affordable health. Individualizing cancer screening is first on the list. Johns Hopkins solutions will be tested locally, then disseminated internationally. Building on its strength as a trusted provider of world-class medicine, Johns Hopkins will become a promoter of world-class health.
What is the objective of the Johns Hopkins Individualized Health Initiative, or Hopkins inHealth?
In simplest terms, Hopkins inHealth (HiH) is an initiative to discover, test, and implement health information tools that allow the individual to understand, track, and guide his or her unique health state and its trajectory over time. The goal of a health care system, then, is to consistently guide each individual’s trajectory toward a health state that supports a better quality of life.
Figure 1. The Johns Hopkins individualized Health Initiative (Hopkins inHealth). The four cores depict methods research and tool development, while the pilot projects illustrates the four initial health applications. The green arrows indicate the replications of the initial successful pilots across many medical disciplines (vertical arrow) and across ever-larger populations (horizontal arrow). The ultimate objective, shown in the red circle on the right is to improve health at more affordable costs.
Like an airplane, one’s health changes over time, producing a trajectory. In both cases, the goal is for the individual to arrive safely at a chosen destination. Pilots are aided by flight controllers and radars that monitor position and trajectory. Similarly, individuals need tools to monitor and manage their health trajectories. Johns Hopkins inHealth will discover how to define, measure and communicate health state and health trajectories meaningfully, allowing individuals and their clinicians to make educated decisions—to guide their own trajectories toward overall health and away from disabling conditions and diseases. When diseases do occur, inHealth will provide information essential to individualized early detection and treatments that minimize loss of function and maximize engagement.
How will the Johns Hopkins individualized Health Initiative be organized?
inHealth is envisioned as an initiative, not a center or institute or department. It will weave itself throughout the JHU, JHHS and APL fabric to achieve its goals by providing intellectual and material capital in support of a large number of existing centers, institutes and programs such as the Armstrong Institute for Patient Safety and Quality, the Center for Public Health Informatics, the Institute for Clinical and Translational Science, the Global mHealth Initiative, and the Systems Institute.
Figure 1 shows that inHealth will initially comprise four cores and four start-up applications.
Information Technology for Health will, one health problem at a time, define health state and develop tracking systems--analogous to radar for tracking an aircraft--using statistical models, simulation, and Bayesian network methods[4]. As we develop experience in tracking and defining health states, we will partner with others to develop a new platform for inHealth IT applications or “inHealth apps.” These applications will support health experts to create innovative tools that improve decision making for population and patient health. These tools will extend the reach of Johns Hopkins doctors and health experts to communities around the country and globe.
Learning communities for health will allow each Johns Hopkins patient or study participant to benefit from knowledge gained and catalogued from previous patients and participants. These learning communities will develop the bioethics, biostatistics, and clinical research methods to combine information from clinical research and care over time and across populations. It will improve the quality and affordability of health care by eliminating the arbitrary and inefficient divide between clinical research and practice.
Bioscience discovery to advance health will make targeted investments in Pasteur’s Quadrant[5] of basic science to discover solutions to health measurement problems identified by the inHealth Initiative. Just as the discovery of radio waves enabled radar, this core will seek basic discoveries that lead to new measurement technologies for tracking health trajectories.
Organizational Models for Affordable Healthcare. The long-term goal of this core is to test, and apply the information-science tools from the first three cores to improve a population’s health at more affordable cost. Johns Hopkins HealthCare, an inHealth partner, currently provides capitated medical care for 275,000 persons. The inHealth methods and products will be tested here first.
The four initial case studies have been selected to represent the breadth of potential projects. Cancer screening and obesity/diabetes management represent major components of the wasted health investment, within the Johns Hopkins populations and across the country. The brain imaging and autoimmune disease case studies will motivate and test the inHealth approach on specific technically challenging problems.
Why Johns Hopkins?
Johns Hopkins will combine the assets of its University, Health System, and Applied Physics Laboratory—leaders in their fields—to improve the quality and affordability of health for people within the Johns Hopkins community. We will then disseminate the lessons learned to make world-class affordable health available to all Americans. Johns Hopkins Health System (JHHS) is a $5 billion per year integrated global health enterprise and one of the leading health systems in the United States. JHHS comprises four academic and community hospitals, four suburban health care and surgery centers, and 35 primary health care outpatient sites serving a total of more than 1,000,000 patients per year. Johns Hopkins Health Care manages care for 275,000 persons in three plans. Our Home Care Group treats 82,000 adults per year. For 21 consecutive years, U.S. News and World Report has ranked Johns Hopkins Hospital the best in the nation.
The Johns Hopkins University comprises nine schools. Together, they cover the academic fields essential to addressing the U.S. health care crisis: population health, medicine, bioscience, behavioral science, computational and data science, and systems engineering. Seventy-five percent of Johns Hopkins professors—roughly 2,000 of its 2,600 faculty—work on problems of human health. The Johns Hopkins University is the largest recipient of federal funding for health research, and our faculty thrives within a culture that encourages entrepreneurial approaches to solving societal problems.
Of particular importance, the Bloomberg School of Public Health was the world’s first school of public health and remains the best. Its population health expertise is essential to population health management. The Johns Hopkins School of Medicine, among the best in the world, is a leader in basic bioscience and in clinical research. The School of Nursing is ranked first in the nation. It can play a central role in devising effective ways to communicate information to healthy persons, patients and their care providers. Finally, the Whiting School of Engineering is home to the country’s top-rated biomedical engineering department and is a leader in systems engineering, central to a successful inHealth program.
The Applied Physics Laboratory (APL) brings the capacity to engineer and implement the inHealth methods and tools. Comprised of 3,000 scientific and engineering staff, APL offers enormous expertise in designing and building complex information systems and powerful analytic tools. With an annual budget of $1 billion, APL is a global leader in applying information science and systems engineering to national security and defense, space science, and bioscience. APL is already working with the U.S. Department of Defense to ensure that its medical manpower is deployed efficiently and to discover the utility of genomic data to individualize uniformed service members’ health care.
How will inHealth benefit the patient?
inHealth will enable both patient and doctor to better understand the patient’s health state and its trajectory to make better-informed health decisions. Approximately 25% of Medicare expenditure goes toward “preference-sensitive” care, whereby patients are confronted with different treatment options with different outcomes.[6] For example, in prostate cancer treatment, watchful waiting and surgery are options that depend critically on patient preferences. Where information is presented clearly and effectively to patients and their physicians, they are empowered to make better decisions that improve health outcomes at reduced costs.
In the near future, it will become routine for a doctor to order targeted genomic and epigenomic profiles in those situations where the new information has value. When analyzed carefully, these profiles can improve prevention, diagnosis and treatment decisions. Of course, the patient’s complete health record—showing the genetic and epigenetic profile, medical history, and much more— will follow the patient wherever he or she may go, precluding the need for new diagnostic tests every time there is a move or change of doctors.
Consider inHealth’s potential in the field of cancer screening and early detection. Clinical trials have suggested that the prostate-specific antigen test (PSA) for prostate cancer can save lives. Yet the imprecision of this tool is well-documented. Its advantages are offset by overuse among people who can derive little benefit, and by over-treatment of non-life-threatening cancers that the test reveals. Biostatisticians estimate that, to save a single life from prostate cancer, more than 1,400 men over age 50 would need to have PSA tests. These tests, in turn, would lead to 47 unnecessary radical prostatectomies, many with severe side effects such as impotence and incontinence.