Watch Renown Health President and CEO Tony Slonim, M.D., DrPH, FACHE, give a TEDx Talk about our community’s groundbreaking population health study.
What if you were told that if you provide your DNA in a simple spit test, you could be healthier? Now what if it wasn’t just you, but also your family, neighbors, community, state or nation. Would you do it?
The Healthy Nevada Project is what some call the fastest clinical trial enrollment in the history of the country. All told, more than 35,000 people have already participated in genetic testing as part of it. Their goal: to arm themselves with information about their genetic risks for illness and disease so that we can improve population health.
Tony Slonim, M.D., DrPH, FACHE, is the president and CEO of Renown Health — the region’s largest, not-for-profit health system serving Nevada, Lake Tahoe and also the eastern Sierra. He is a national expert in patient safety, accountable care, healthcare quality and innovative care delivery models focused on improving health outcomes across the community.
Read Dr. Slonim’s TEDx talk transcript:
I am a physician and health system executive. Every day for 25 years, I have woken up to help motivate people to live healthier, first as a doctor working with individual patients and families and now as a CEO working with communities, regions and an entire state. If I told you that if you spit in this tube, I could make you, your family, and your community and maybe even the nation healthier, would you do it?
Well, in 48 hours, 10,000 people joined us on a pathway towards better living. Today we have 35,000 participants who have shared their DNA with us so that we could combine it with clinical data, environmental data, and social data and unlock a journey towards healthier living. 35,000 participants. Do you realize how ridiculously significant that is? 35,000 people shared their most precious resource, their DNA, so that they could help themselves and their community to live healthier. I believe this is the first step towards launching a healthy USA. How do you explain that as one of the smartest and wealthiest countries on the planet, we still suffer from extremes of chronic conditions, excess healthcare expense and inferior quality? I believe we have to inspire people to live healthier, I believe we have to help them dream how to live healthier, and I believe we have to show them how to live healthier. That is why we created the Healthy Nevada Project.
So what happens when you come to Nevada? You learn that there is a pioneering spirit. People challenge the status quo, and they embrace innovation. It should have come as no surprise to me that 35,000 participants would be willing to step up and improve not only their health and their family’s health but the community’s health. If you decide to join us, you come to one of our testing centers, you register online, and you get appropriate consent signed because we want to let you know what you’re getting into. You then spit in a tube just like the one I showed you. It’s not very glamorous – we all do it, don’t worry. You hide behind a curtain, you come out, and all of it is done. (Laughter) You then drop off the specimen in a drop-box, and we send it to our wonderful partners at Helix who perform clinical-grade genomic sequencing on the specimen. Every good test ends with a selfie. If you’re lucky enough, you get a selfie with the governor. And then the data comes back to our wonderful partners at the Desert Research Institute and their amazing computer scientists who apply machine learning and advanced computer technologies to these data to understand individual patterns and community-based patterns of disease. If you happened to have something that you needed to be aware of, we give you a report, we make genetic counseling available, we assure that you get the right testing and a doctor if you need one to make sure that you follow through.
So you might ask, well, why are we doing this? Well, it turns out that every individual, family, zip-code community, state and perhaps even the nation is subject to these determinants of our overall health status. They include the clinical care that you receive, the social circumstances you find yourself in, the environment of care you live in, your behaviors and your genetics. And for too long, maybe we haven’t understood the independent and interactive responsibility of these determinants in our overall health status. As we move from one person and one family at a time to understanding how these determinants operate in our community, in our state and our nation, we actually may be able to improve the way that people live. And it doesn’t much matter in our project if you happen to be one of the 15.000 people who came from our five most impoverished zip codes or are one of the guys on the professional soccer team; this program is for everyone.
So let me share a few examples of some of the great opportunities that we’ve had to change people’s lives. This is Paige. She took the test and shared her DNA with us. She is one of our great employees. And she’s adopted. She took the test to see if she might identify members of her family, and she found a half-sister living in Las Vegas. She now has an entire family with whom to share holidays and, importantly, understand some of the family contributions to living healthier.
This is Heather. Heather took the test and shared her DNA with us. She had been struggling for two years with a worsening quality of life and shortness of breath. She is a pretty savvy cookie. She did all the right things as a consumer: she saw the right doctor, she went to the specialist, and she got the CAT scans and the lab test. And she had this medical mystery where no one could figure out what was wrong with her. When she took the genetic test, she found out that she had a rare enzyme deficiency known as ZZ alpha-1 antitrypsin deficiency, which causes chronic liver and lung disease. She now gets monthly infusions in her home and is living a better quality of life.
Whether you are Paige at one end of the continuum, who is interested in learning more about your family and your ancestry, or you are Heather at the other end of continuum, who has a condition that needs to be identified, our responsibility as health leaders is to provide people with information and start a conversation with them about how they can live healthier. We believe that this is one of the most important health literacy projects at the community level because we are starting a conversation with people about how they can live a healthier life.
This is Danny. Danny shared his DNA with us. He’s a young, healthy, strapping guy who loves the outdoors and loves to bike ride. Well, it turns out, when the report came back, Danny has a rare genetic condition called age-related macular degeneration. That is a genetic problem that can cause blindness in some circumstances; it leads to retinal changes and problems with your eyes. Well, now Danny, with those results, is eating right and getting out there and doing appropriate surveillance on his condition to make sure that he is not subject to any of the problems that might come his way.
And as we move from these individuals to our community, which has been prone by chronic conditions, we’re understanding a little bit more about how we move from people individually to improving the health of the community overall. For example, we’ve now identified the tier-one conditions that allow us to make people better and get appropriate surveillance.
One of those is familial hypercholesterolemia, where we’ve identified 115 members of our community who suffer with this condition and are at risk for premature cardiac and vascular disease.
Or perhaps the 127 people who are BRCA positive and are subject to the risk of breast and ovarian cancer.
Maybe it is Lynch Syndrome, a precursor to colon cancer, and you’re one of the 44 people who has that gene.
Or perhaps like Danny, you are one of 108 other people who has a risk factor for age-related macular degeneration and now needs to get appropriate screening tests.
We’ve offered all of these people free CAT scans of their retina to understand where their disease is and its progression.
The Healthy Nevada Project has allowed me to believe that we could make America healthier. We have ample science and technology. So what’s been getting in our way? Well, perhaps we’ve been too paternalistic. We’ve been so focused on caring for people who have illness and disease that we’ve missed the opportunity to get ahead of that conversation and treat people who just want to live healthier lives and prevent themselves from becoming patients. At the end of the day, none of that matters. I believe that we have to inspire people to live healthier, I believe that we have to help them dream to live healthier, and I believe that we have to show them how to live healthier. If I told you that if you spit in this tube, I could make you, your family, and your community and maybe even the state and nation healthier, would you do it? (Audience) Yeah.