Fastest-Moving Population Health Genetics Study Serves as National Model
The Healthy Nevada Project®, developed by Renown’s Institute for Health Innovation, is one of the first – and fastest moving, community-based population health studies in the U.S.
The team is returning medically-actionable results to participants and conducting extensive research. In three months, 24,000 study volunteers were notified of their genetic health risks tied from CDC Tier 1 conditions (Hereditary Breast and Ovarian Cancer Syndrome, Lynch Syndrome and Familial Hypercholesterolemia). This is potentially life-saving information that more than 60 percent who tested positive may not have received otherwise.
The following is a question and answer feature with the president and CEO of Renown Health, Anthony Slonim, MD, DrPH, FACHE.
What is the strategic impact of population health studies like the Healthy Nevada Project®?
Dr. Slonim: More research is pointing to the importance of genetic testing on the individual level to help people discover and mitigate their genetic risks. Initiatives like the Healthy Nevada Project® and the Healthy USA Project® take that a step further by emphasizing the impact of population level screening and how health systems can use that information to guide physician workforce planning, align healthcare services to the need and improve the health of their communities.
As healthcare organizations commit more fully to meeting community needs, they must also be aware of the factors driving each community’s overall health status. A major focus of strategic planning is healthcare programming to serve the needs of the sick and injured, but many problems stem from the social, environmental and genetic determinants that underlie a community’s overall health outcomes. If not adequately addressed, these can lead to future healthcare issues.
Through the Healthy Nevada Project®, we are using data to address the most frequent inherited conditions in our population and assuring people have access to needed screening and intervention. We are also providing early identification of chronic conditions that need treatment and finding patterns in our services to improve wait times, patient no shows and plan for provider recruitment. Because the genomic sequencing (spit) tests are offered at no cost, we are enhancing participant engagement regardless of socioeconomic status by democratizing the availability of genetic testing. Our health “report card” for diseases such as heart disease and respiratory disease is poor and collectively, these conditions among local residents stand at 33 percent above the national rate. This is important because, despite leading the country in growth and innovation, Nevada ranks 47th in the nation in terms of health.
What’s next for the Healthy Nevada Project®?
Dr. Slonim: Since launching in Sept. 2016, the Project has become one of the largest community-based population health studies with more than 35,000 Nevadans already enrolled. By the end of this year, we expect approximately one in 40 Nevadans will be part of this landmark study. Ultimately, we aspire to offer genetic testing to any Nevadan interested in learning more about their health and genetic risks.
Of course, behind each of those numbers is a story. Some study volunteers have discovered half-siblings and unexpected ancestry results. More importantly, hundreds are discovering life-changing results. In October, we become one of the first studies to return clinical results for CDC Tier 1 conditions including familial hypercholesterolemia, hereditary breast and ovarian cancer syndrome, and Lynch syndrome. In just three months, more than 24,000 study volunteers were notified of their risks for these conditions. Even more remarkable, more than 60 percent of those who tested positive did not have a family history and would not have been diagnosed using national standards of care. The Project is saving lives here in Nevada and we hope soon – will be saving lives nationwide.
What’s your goal for the Healthy USA Project®?
Dr. Slonim: Just as we’re seeing with the Healthy Nevada Project®, we want the Healthy USA Project® to improve health from the individual up to the community and state levels and beyond. By better understanding how genetics, environment, social factors and healthcare interact we can help predict who may be at greater risk for certain conditions – allowing for quicker diagnoses and the development of more precise treatments.
For us at Renown Health, the Healthy Nevada Project® started out of a need for a data roadmap. In 2015, our strategic plan emphasized the distinction between health and healthcare but we weren’t able to improve health outcomes for priority populations without robust data. That critical need led to a partnership with Desert Research Institute (DRI), a global leader in environmental data. Together, we’ve quickly grown our capabilities to lead a larger, more complex research study that will analyze and model public health risks for Nevadans for generations to come.
Today, we are engaging with other premier healthcare systems around the country to improve health in their local communities by joining this landmark, crowd-sourced genetic study. The more data we can collect, and the more people we can engage, the greater impact we can have.