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Healthy Nevada Project: Genetic Data Changing Lives (10:17)

“I’m going to share with you how 35,000 people in our community spit in a tube just like this one so that we could have their genetic information and combine it with clinical information, sociodemographic data, environmental data, and help them to live healthier lives,” begins Anthony Slonim, President and CEO for Renown Health.

The Healthy Nevada Project, dubbed the fastest clinical trial enrollment in the country, registered 10,000 people in its 48 hours, according to Slonim. Each enrollee then spat in a tube at some point over the project’s next 90 days. “Importantly, in contrast to other clinical trials, not only are we getting information from participants,” says Slonim, “we’re giving information back about how they can modify their risks for health, change their behaviors, and hopefully mitigate their risks for disease.”

Slonim shares that he recently walked his daughter down the aisle at her wedding, a moment fathers look forward to. But when his daughter was 8 years old, the future didn’t look so bright for this pair: Slonim was diagnosed with a malignant form of cancer. “We didn’t know if I was going to make it,” he says. “When I look back on those times . . . I had amazing access to great health care, I had wonderful providers, I had people who made a difference for me, and there was a little bit of luck in there, too.”

“[The Healthy Nevada Project] is focused on how we help people look forward, not back,” says Slonim. We all know that health status largely depends on socioeconomic status, and that a major contributor is behavior. Clinical care — if people can even access it — is only a minor contributor to overall health status. Underlying all of this: our genetic code.

But genetics is not the only answer, Slonim reminds the audience. It has major interactions with other things. “If you modify your behavior, you may be able to reverse and mitigate some of the risks that you have in your genetic code,” he says.

“It was important for us to think at the individual level how we had people do this [Healthy Nevada Project],” explains Slonim. “For us, engaging people in a conversation and giving them their genetic information back was the first step toward health literacy. Because people didn’t understand it. They didn’t understand what it meant, and it was our obligation to engage them in a conversation that was very personal about what we might find and how we might find it.”

Moving from the individual to the macro level, Slonim shows a map of Nevada, pointing out Washoe County, where Renown Health is located, and the broad geographic area it serves. Renown is the only tertiary care provider for 80,000 square miles, integrated with three main hospitals, rehab centers, skilled nurses, 400 doctors, and a range of services, according to Slonim. “[This] makes health care delivery a little bit different, because we have to use remote monitoring, we have to provide remote care,” he says. It takes 6 hours to drive from some parts of the area Renown serves to one of its hospitals; 30 outlying hospitals in those communities help to provide care.

“Nonetheless, as we engage people even in the rural environment about something that is really progressive and really forward-thinking, their genetics, they put their hands up and they say, ‘Yes, I want to be included.’ This is an interesting social dynamic, because we’re able to engage people across socioeconomic status, we’re able to engage them across geographic places,” says Slonim. And Renown found that about a third of its patients are insured by Medicaid.

Slonim describes Renown’s partners in the Healthy Nevada Project: the Desert Research Institute, a public entity of data scientists, and Helix, a genetics processing firm helping with the project’s clinical-grade genome sequencing. “We can use it to make clinical decisions and get people to an understanding about just where the risks are, help them, explain the conversations to their doctor, and engage them in a very different conversation about how they do prevention and appropriate screening,” says Slonim.

The next stop for the Healthy Nevada Project: Clark County — Las Vegas, where they plan to enroll another 25,000 people.

Moving back down the micro level, Slonim tells a story about Paige, a Renown employee who was adopted. She engaged in the Healthy Nevada Project to find out where her ancestors were from, and in the process gained a family. “She found her stepsister in Las Vegas and now can share holidays and parties and learn about her health and risks of health from her stepsister,” says Slonim.

Slonim next talks about Heather’s experience with the Healthy Nevada Project. Heather had experienced progressive shortness of breath for 2 years and didn’t understand what was going on. She’d been doing all the right things: she visited her primary care doctor, got referred to a pulmonologist, received CT scans and MRIs — test after test, bloodwork after bloodwork. “Until she took our test,” Slonim says. She was found to be homozygous for the ZZ gene for Alpha-1 antitrypsin and is now on enzyme replacement therapy to stabilize her lung function. “And she can see her 8-year-old daughter grow up,” he says. “We’re changing lives at the individual level.”

Not all Healthy Nevada Project stories are about reversing life-threatening health issues. Slonim explains, for example, that they’ve identified 240 people with the gene for macular degeneration. “You can do a CT scan of the retina and figure out if the vessels are starting to proliferate, and do something about it before they go blind,” says Slonim. “Imagine that, 240 people where their quality of life will be changed.”

The Healthy Nevada Project is also using its data warehouse and predictive analytics to drive a conversation about opioid use. Slonim shows a graph of the frequency distribution and uptick in Washoe County. After analyzing the prescription writers, zip codes, and patients receiving those prescriptions, the project began providing alternatives for controlling pain.

In Nevada, performance on common conditions like heart disease, cancer, and lower respiratory disease, along with age-adjusted death rates, outstrips some other parts of the United States. “This project was an opportunity to give results back to people,” Slonim says. Renown started giving CDC Tier 1 results for the BRCA gene, for familial hypercholesterolemia, and for Lynch syndrome, a precursor to colon cancer. “We’ll have the two conditions that are the top 10 primarily in the cardiovascular and oncology space going back to patients so that they can understand appropriate screening, appropriate preventive conditions, and make sure that they’re engaged in a literacy conversation about how to improve their health and their well-being.”

“As we move beyond northern Nevada to Clark County, and Las Vegas, and then beyond in Healthy America, imagine what we could do,” says Slonim. “So far, we’ve invested about $5 million. About $100 per person. Imagine that $100 per person, how it’s changing lives. We’re on a journey here and we’re excited as we continue to find the next three to five partners outside of Nevada who are going to participate with us in the Healthy America Project.”

From the NEJM Catalyst event Disrupting the Health Care Landscape: New Roles for Familiar Players, held at NewYork-Presbyterian, October 25, 2018.

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