Diversifying Data: A Precision Medicine Approach to Improving Health Outcomes
by Kimberly Rodgers, MA, and Gulzar Shah, PhD, MStat, MS
Health Informatics Innovations and Applications highlights ways that health informatics innovations and applications are supporting stakeholders in public health practice and policy to advance their mission of improved population health. The series will also highlight innovations in health care informatics.
America spends more than double on health care per person than our peers in developed nations, yet our health outcomes don’t measure up. In 2017, the United States, ranked as the world’s 35th healthiest country, experienced a decline in life expectancy for the third consecutive year and saw increased death rates for seven of the nation’s 10 leading causes of death. As important as it is to understand the range of factors that explain why our well-funded health system isn’t producing healthier people, it’s just as critical to shift attention to how better data could help change this reality.
Shifting the Tide to Ensure Inclusive Data
Clinical research in the U.S. has historically focused on white men. Today, minorities make up nearly 40% of the population and we need health data and information that better reflect the current demographics of our society. Americans are diverse in race, ethnicity, gender, sexual orientation, and physical ability, among other things. The health risks and needs of a white man, a Latina woman, and a queer black man are very different, yet our current health system tends to operate with a one-size-fits-all approach.
If the U.S. is ever going to become a healthier nation, our health services need to be as unique as the needs of our diverse communities. But to understand what those needs even are, historically marginalized people (e.g., people of color, people with disabilities, LGBTQ people) must be represented in health research. Through the All of Us Research Program, the National Institutes of Health (NIH) is trying to ensure that representation. Diversifying data precision medicine
Launched nationwide in May 2018, the All of Us Research Program aims to create a research community of one million people who will share their unique health data. The data collection will occur over the span of 10 years or more and, most importantly, will include people from communities that have been historically underrepresented in health research. The information gathered from participants will be stored in a database so that approved researchers can access this data and explore how factors like environment, lifestyle, and genes can impact health and develop more precise health interventions that are unique to individuals. Diversifying data precision medicine
Understanding Precision Medicine: Better Data, Better Interventions
Precision medicine is health care that is based on you as an individual and your risk factors, environment, and health needs. It considers factors like where you live, what you do for a living, and your family health history. Precision medicine’s goal is to be able to tell individuals the best ways to stay healthy and, if someone does get sick, help health care teams find the treatment that will work best for that specific person, given his or her unique condition and risk factors.
Precision medicine isn’t a new concept. When you wear your glasses, you can see; but when you try on someone else’s, things get blurry. That’s because your vision—and the degree to which it needs correction—is unique to you. When a doctor prescribes someone a certain dosage of anti-depressants, that dosage is unique to that individual; those same pills won’t be as effective for someone who’s depression is more or less severe. This is precision medicine at work.
But while precision medicine is all around us, to use it effectively for all people we need more data about different types of people. By collecting this breadth of data, All of Us will help give health care providers the information they need to make tailored recommendations to people of different backgrounds, ages, or regions. And not only will health care providers benefit from a greater understanding of the people they serve, so will public health (PH) professionals, who could potentially leverage All of Us data to develop interventions that focus on preventing disease and keeping people healthy longer.
Public Health Implications of Precision Medicine
At first thought, precision medicine and public health seem to head in two different directions. The focus of precision medicine differs from that of public health: treatment versus prevention, individual versus population health, uniqueness of the individual patient versus population and subgroup patterns. Precision medicine is supposed to customize diagnosis and treatment for individual patients based on an individual’s biomarkers, genetics, and psychosocial attributes. In contrast, public health is concerned with prevention—one of the primary objectives is to assess and improve population health and eliminate health inequities rooted in structural determinants (policies, culture, and social values), which in turn shape social determinants of health (living conditions, environmental factors, health behaviors) and health disparities. Digging deeper, it becomes clearer that precision medicine may have serious implications for public health. Diversifying data precision medicine
Precision medicine has the potential to inspire and support precision public health. The precision medicine-generated information systems and approach may lead to advances in disease surveillance and elimination of disparities through superior risk-stratification of population subgroups that are traditionally masked in averages and numbers. The information systems developed with funds for precision medicine will be available for utilization by the public health sector. Similarly, advancements in hardware and software solutions in health care, such as electronic health records (EHRs), have also benefited public health. Cheaper IT solutions and the use of EHRs and other data primarily developed by health care have empowered public health agencies to perform superior surveillance and prevent potential disease outbreaks. Many in public health argue that the information systems for precision medicine will allow for better risk stratification and targeted screening and prevention of conditions such as birth defects, rare diseases, and cancers. There is a potential that discoveries in precision medicine may assist with discovery of new vaccines. Diversifying data precision medicine
Negative implications may be equally compelling. It may be argued that growing attention to precision medicine may pitch it against public health, a traditionally underfunded sector, in attracting financial resources. Although not exactly a zero-sum competition for public and non-profit funding, research and development in precision medicine will increase competition in this space, driving further innovation that could benefit us all. Research and development projects for advances in precision medicine are known to have multi-billions in cost in a relatively short period of a decade or so. Some of those resources may have potentially gone to public health. And, since many top research brains follow the research monies, a shift in attention to precision medicine may have led, or may lead in the future, to a shift in attention away from public health practice-based and practice-relevant research.
In addition, the scientific evidence from precision medicine may not be generalizable to population groups, making such evidence of little use for current public health goals. The lack of generalizability concern rests on the argument that precision medicine’s focus is on genomic advances for customized diagnosis and treatment of individuals, which is clearly different than the focus of public health, which is on preventive population health. Consequently, it may be argued that heavy investments in precision medicine may come at the cost of the current central goal of public health, to eliminate health inequities and health disparities. Diversifying data precision medicine
On May 8, I (G. Shah) started a discussion string on Research Gate titled, “Precision medicine: will it benefit both rich and poor around the globe?” In the 41 replies posted to date, an overwhelming majority thought that precision medicine will be a step forward in medical science but may inadvertently open a big door for health inequities, at least until the cost is affordable by everyday people. Among the two most popular responses, one argued that big data on DNA about “physical types, symptoms, habits, … condition, … genetics, and inheritable diseases collected for various purposes,” when released for medical ends and proactively utilized for precision medicine, will benefit a much broader spectrum of the population because such data are collected for persons with diverse socio-demographic characteristics. The utilization for precision medicine will depend on liberating such data for easy access for medical use. The most popular response indicated that true precision medicine may increase inequity, at least in its early adoption phase, as “the cost may be a limiting factor for the less privileged.” However, there is a recognition that the long-term benefits of precision medicine will advance prevention and treatments for all.
In sum, there are arguments about precision medicine’s potential positive and negative implications for public health; however, we believe that when widely available, precision medicine may be leveraged to advance public health. It is up to the public health community as to how diligently it guards public health interests and how innovatively the precision medicine-generated advances in IT infrastructure and information systems are harnessed to offset some of the concerns caused by investments in precision medicine.
Kimberly Rodgers, MA, is the Communications Manager for the National Association of County and City Health Officials [naccho.org] (NACCHO). With a background in health communication and a passion for health equity, she uses her communications expertise to ensure that local health departments have the information and resources necessary to create healthier communities.
Gulzar H. Shah, PhD, MStat, MS, currently serves as a Professor of Health Policy and Management and the Department Chair, Health Policy and Community Health, at the Jiann-Ping Hsu College of Public Health (JPHCOPH), Georgia Southern University. He served the JPHCOPH as an Associate Dean for Research before accepting the Department Chair position in 2017. Prior to moving into academia, Dr. Shah spent over 17 years serving in public health practice, first at the Utah State Department of Health, and subsequently at the National Association of Health Data Organizations (NAHDO) and National Association of County and City Health Officials (NACCHO). [Full bio.]