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CEO Blog: Improving Health Through Genetics and Big Data
Renown Health President and CEO Tony Slonim, MD, DrPH, discusses efforts nationwide to develop a more effective and efficient way to deliver care. explains the benefits of Renown Health’s population health study with the Desert Research Institute and 23andMe.
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Optimizing Mammogram Screenings: A Genetic Approach to a Personalized Screening Schedule
Breast cancer screening has long been a cornerstone of women's healthcare. With 1 in 8 women diagnosed with breast cancer in their lifetime1, the United States Preventive Services Task Force (USPSTF) has developed screening recommendations to help detect early-stage cancer. Notably in 2023, the USPSTF revised the recommended age for biennial mammogram screenings for women with average risk to start at age 40 instead of 502, estimated to result in 19% more lives being saved3 by starting screening earlier. While initiating screening at an earlier age offers advantages to a wide demographic, concerns about the potential of over-screening prompted research into the feasibility of identifying women with lower breast cancer risk who could safely delay mammograms. While guidelines address high-risk individuals, a notable gap exists in providing recommendations tailored to those at lower risk. To gain insight into a patient's risk level, physicians are able to utilize genetic testing to understand an individual's genetic makeup, providing precise insights into their predisposition to various health conditions, including breast cancer. Armed with this genetic information, healthcare providers could craft tailored screening strategies that align with an individual’s specific risk profile. This genetic risk-based approach underscores the value of genetics in individualizing the onset of screening to help avoid over-screening and its associated costs. Surprisingly, genetic information is not currently being widely utilized to identify women at risk of breast cancer or other diseases in clinical practice, despite its potential to make a significant positive impact for patients. A recent retrospective analysis of 25,591 women from the Healthy Nevada Project4 sheds light on the potential benefits of this genetic risk-based approach. The study classified 2,338 (9.1%) of these women as having a low genetic risk for breast cancer. What's remarkable is that these women exhibited a significantly lower and later onset of breast cancer compared to their average or high-risk counterparts. This finding suggests that it might be safe for low-risk women to delay mammogram screening by 5 to 10 years without compromising their health.
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Introducing Dana Renown Institute for Health Innovations New Life Sized Holographic Kiosk
Presented by the Desert Research Institute and Renown Health, DANA will help people learn more about the Healthy Nevada Project® and their own unique, genetic health traits What is the Healthy Nevada Project®? What are the benefits of joining this research study? How can I find out if I carry genes for health risks like heart disease, hereditary breast and ovarian cancer syndrome and Lynch syndrome? What if a holographic avatar, powered by artificial intelligence (AI), could answer all these questions and more? DANA has all the answers, she is a virtual assistant with “DNA” in her name, presented by the Renown Institute for Health Innovation (Renown IHI), a collaboration between Renown Health and the Desert Research Institute (DRI). This life-sized, holographic avatar will greet individuals outside Renown Regional Medical Center’s Sierra Café, and talk to them about the Healthy Nevada Project, the world’s largest community-based genetic population health study. Members of the media are invited to meet DANA this morning from 10 a.m. – noon. Please reply to this email or call (775) 691-7308 to coordinate a meet and greet. “Unfortunately, Nevada ranks among the lowest in the nation for health outcomes—and we are working to change that,” said Anthony Slonim, M.D., D.Ph., president and CEO of Renown Health and president of Renown Institute for Health Innovation. “Through the Healthy Nevada Project® , our goal is to offer genetic testing to every Nevadan interested in learning more about their health and genetic profile. Thanks to this advanced technology, DANA will offer people a personalized explanation of the Project, and help them take the next step to better understand their health, and their health risks, so they can modify their behavior and ultimately, live a healthier, happier life.” With more than 51,000 study participants enrolled to date, the Healthy Nevada Project® is considered the fastest-enrolling genetic study in the country. The Project is also the first of its kind to return clinical results to study volunteers, which means participants can learn their genetic risks tied to heart disease and certain cancers, as well as lifestyle changes that could potentially help reduce their risk and prevent disease. Furthermore, participants can choose to share their information with their medical provider to improve and enhance their medical care. “We are always happy to engage with our study participants and look forward to having them meet and engage with DANA,” said Joseph Grzymski, Ph.D., research professor at DRI, principal investigator of the Healthy Nevada Project® and chief scientific officer for Renown Health. “At a time of physical distancing and limiting human contact where possible, using tools like an avatar and AI are important for communicating, whether it be for genetics, vaccinations or other important health information.” Visitors can interact with DANA through a touch screen (cleaned and sanitized after every encounter) to learn more about the study, enter their contact information and schedule an appointment to join the free genetics study or receive more information about their test results. Kiosk visitors are asked to maintain physical distance guidelines and use the hand sanitizer and Sani Wipes available next to the kiosk. Renown Institute for Health Innovation is a collaboration between Renown Health - a locally governed and locally owned, not-for-profit integrated healthcare network serving Nevada, Lake Tahoe and northeast California; and the Desert Research Institute - a recognized world leader in investigating the effects of natural and human-induced environmental change and advancing technologies aimed at assessing a changing planet. Renown IHI research teams are focused on integrating personal healthcare and environmental data with socioeconomic determinants to help Nevada address some of its most complex environmental health problems; while simultaneously expanding the state’s access to leading-edge clinical trials and fostering new connections with biotechnology and pharmaceutical companies. Learn more at healthynv.org.
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Study Shows Importance of Ensuring Participant and Provider Follow-up After a Genetic Screening Result
Released in partnership with the Desert Research Institute: New research from the Healthy Nevada Project® finds that a confirmed diagnosis does not always result in changes to patient care. Presenting individuals with potentially life-altering health information doesn’t mean the individuals – or their healthcare providers – will act on it. Follow-up education and conversations about actionable care plans with patients and their doctors are key next steps, according to new research from the Healthy Nevada Project. The Healthy Nevada Project is a genetic screening and research project that launched in 2016 as a partnership between DRI and Renown Health. The project now has more than 50,000 participants, with genetic sequencing provided by Helix. Between September 2018 and September 2020, the Healthy Nevada Project successfully notified 293 participants that they were genetically at risk for hereditary breast and ovarian cancer syndrome, Lynch syndrome, or familial hypercholesterolemia – three common genetic conditions known collectively as the Centers for Disease Control and Prevention (CDC) Tier 1 conditions. In a study published today in Frontiers in Genetics, Healthy Nevada Project scientists looked at the impact that notifying a patient of a positive finding for a CDC Tier 1 condition had on the care that the patient received in the months and years that followed. According to their results, among the 293 Healthy Nevada Project participants who were notified of their genetic risk of a CDC Tier 1 condition, 71 percent of participants with electronic health records shared their findings with healthcare providers. However, only 30 percent of the electronic health records for these patients contained documentation of the genetic diagnosis, and only 10 percent of examined patients experienced a possible change in care after receiving the results of their genetic screening. “The Healthy Nevada Project was implemented with a ‘hands-off’ approach where the participants receive their findings and decide with whom and when to share those findings. The findings were not automatically added to their electronic health records,” said Dr. Gai Elhanan, health data scientist at DRI and co-lead author of the study. “What we’re learning now is that to ensure that important genetic findings are integrated into the care journey it is important to make their inclusion into the electronic health records part of the study.” This study builds on previous Healthy Nevada Project research published in Nature Medicine demonstrating the importance of screening for CDC Tier 1 conditions, which affect about one in 75 individuals and can be mitigated or even prevented from developing into disease when detected early. This study found that as many as 90 percent of the CDC Tier 1 cases are missed by clinical providers during normal clinical care screenings and examinations. During the current study, the Healthy Nevada Project scientists found that 19 percent of studied participants had already developed one of the CDC Tier 1 conditions, and thus would have potentially benefited from earlier notification about their condition. The study team hopes that their findings will encourage individuals in Nevada to obtain genetic testing for these relatively common conditions. Even if individuals are older or have already suffered from diseases related to these conditions, testing could also prove beneficial to siblings, children, and grandchildren who may also be at risk and who could subsequently be screened in the event of a positive finding. The study team also encourages informing health care providers of the importance of incorporating genetic diagnoses into the pharmaceutical (for example, for Familial Hypercholesterolemia) and treatment advice given to patients. “As a result of this analysis, the clinicians at Renown Health and the Healthy Nevada Project researchers have made significant changes, including obtaining informed consent from participants to report positive findings from their genetics reports directly into their electronic medical record,” said Daniel Kiser, M.S., assistant research scientist of data science at DRI and co-lead author of the study. “This will help both participants, their clinical providers, and the whole state maximize the long-term benefits of the Healthy Nevada Project voluntary population-based genetic screening.” Additional information: The full text of the study, Incomplete Penetrance of Population-Based Genetic Screening Results in Electronic Health Record, is available from Frontiers in Genetics: https://www.frontiersin.org/articles/10.3389/fgene.2022.866169/full?&utm_source=Email_to_authors_&utm_medium=Email&utm_content=T1_11.5e1_author&utm_campaign=Email_publication&field=&journalName=Frontiers_in_Genetics&id=866169. This project was funded by Renown Health, the Renown Health Foundation, and the Nevada Governor’s Office of Economic Development. Study authors included Gai Elhanan (DRI), Daniel Kiser (DRI), Iva Neveux (DRI), Shaun Dabe (Renown Health), Alexander Bolze (Helix), William Metcalf (DRI), James Lu (Helix), and Joseph Grzymski (DRI/Renown Health). For more information on the Healthy Nevada Project® or to request genetic screening, please visit: https://healthynv.org/ About DRI The Desert Research Institute (DRI) is a recognized world leader in basic and applied environmental research. Committed to scientific excellence and integrity, DRI faculty, students who work alongside them, and staff have developed scientific knowledge and innovative technologies in research projects around the globe. Since 1959, DRI’s research has advanced scientific knowledge on topics ranging from humans’ impact on the environment to the environment’s impact on humans. DRI’s impactful science and inspiring solutions support Nevada’s diverse economy, provide science-based educational opportunities, and inform policymakers, business leaders, and community members. With campuses in Las Vegas and Reno, DRI serves as the non-profit research arm of the Nevada System of Higher Education. For more information, please visit www.dri.edu. About Renown Health Renown Health is the region’s largest, locally governed, not-for-profit integrated healthcare network serving Nevada, Lake Tahoe and northeast California. With a diverse workforce of more than 7,000 employees, Renown has fostered a longstanding culture of excellence, determination and innovation. The organization comprises a trauma center, two acute care hospitals, a children’s hospital, a rehabilitation hospital, a medical group and urgent care network, and the region’s largest, locally owned not-for-profit insurance company, Hometown Health. Renown is currently enrolling participants in the world’s largest community-based genetic population health study, the Healthy Nevada Project®. For more information, visit renown.org. About Helix Helix is the leading population genomics and viral surveillance company operating at the intersection of clinical care, research, and data analytics. Helix enables health systems, life sciences companies, payers, and government partners to accelerate the integration of genomic data into patient care and public health decision making. Learn more at www.helix.com.
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Population Health Study Goes Statewide and Opens Enrollment
The study could expand to a quarter million people, making Nevada the only state in the U.S. to offer such a program. Las Vegas, Nev. (May 2, 2019) – The Healthy Nevada Project, a first-of-its-kind, community-based population health study combining genetic, clinical, environmental and social data, is expanding enrollment to Las Vegas. The Project aspires not only to offer genetic testing to every Nevadan interested in learning more about their health and genetic profile but ultimately, to develop and expand the Project for communities across the United States to drive positive health outcomes nationwide. Adding 25,000 Study Volunteers in Southern Nevada The Healthy Nevada Project is announcing a statewide expansion – opening 25,000 testing slots in Las Vegas. With southern Nevada welcoming the study, the Healthy Nevada Project will offer no-cost genetic testing through a simple spit sample to 25,000 study volunteers. Study volunteers will take Helix’s clinical-grade DNA saliva test and will receive their ancestry and traits, at no cost, through the My Healthy Nevada Traits app. Participants will then be given a chance to answer a follow-up health survey from Renown Institute for Health Innovation (Renown IHI), and upon survey completion, will be entered to win an iPhone. In addition, study participants can agree to be notified about genetic test results that could impact their health, and which could be used to improve their medical care. This return of clinical results, plus genetic counseling and other genetic services as appropriate, will be provided by Genome Medical, the leading network of clinical genetics specialists. Healthy Nevada Project’s Evolution & Ongoing Expansion With more than 35,000 study participants enrolled in just over two years, the Healthy Nevada Project has become the fastest-enrolling genetic study in the country. The Project was created by Renown IHI – a collaboration between Reno, Nev.-based not-for-profit health network, Renown Health, and the world leader in environmental data, Desert Research Institute (DRI). Leveraging Renown’s forward-thinking approach to community health care and DRI’s data analytics and environmental expertise, Renown IHI has grown its capabilities to lead a larger, more complex research study of significance that will analyze and model public health risks in Nevada and serve as a national model for future population health studies working to improve overall health through clinical care integration. During the Project’s pilot launch in September 2016, more than 10,000 community members signed up for DNA testing in just 48 hours. In March 2018, phase two offered full genomic sequencing through a simple spit test from Helix to northern Nevadans. In October 2018, the Project announced the return of clinical results for study participants, notifying them of their risk for CDC Tier 1 conditions including familial hypercholesterolemia, BRCA positive 1 and 2, and Lynch syndrome, a precursor to colon cancer. These conditions affect more than one percent of the population and are inherited so they impact family members as well. Now, the Project announced its next phase – expanding enrollment to 25,000 people in southern Nevada. Serving as a National Model This expansion to Las Vegas truly makes this the “Healthy Nevada Project” with a statewide impact making Nevada the only state in the U.S. to offer such a program. “Nevada was ripe to advance population health goals because, sadly, our state ranks near the bottom in health outcomes. The Healthy Nevada Project is working to change that,” said Anthony Slonim, M.D., DrPH, FACHE, president and CEO of Renown Health and president of Renown IHI. “Our researchers are working on a number of clinical programs and scientific studies to determine why in Washoe County, the county in which Renown Health is located, Nevada’s age-adjusted death rates for heart disease, cancer and chronic lower respiratory disease are 33 percent higher than the national rate. Imagine if we can gather more data like this on a national scale and use it to change the future of health and health care? That is what the Healthy USA Project is looking to do in the years to come.” “The Healthy Nevada Project is committed to providing study participants clinically actionable data that will help improve their health,” said Joseph Grzymski, Ph.D., associate research professor at DRI, principal investigator of the Healthy Nevada Project and chief scientific officer for Renown Health. “We are providing this information at the individual level so study volunteers can make lifesaving changes to reduce their risk. We’re also doing it on the community level to develop leading-edge research on health determinants for entire neighborhoods, states and eventually, the country.” Expanding to Become the Healthy USA Project The accelerated speed of the Project is made possible thanks to the ever-decreasing cost of sequencing. Today, Helix is able to sequence an entire exome – which allows reporting on most actionable genomic knowledge – for a fraction of what it would have cost just 10 years ago. Additionally, advances in digital health mean Helix and Project researchers can capture unprecedented amounts of health data digitally, making significant contributions to advancing precision health. The partnership has managed to remove the traditional barriers of population health studies, including the difficulty in recruiting participants, establishing quality high through put lab systems, and scaling interpretation and return of results. This development will be key as other health systems around the country join the Project. “We are thrilled to see the constant, fast-paced evolution of this Project with Renown IHI,” said Justin Kao, CoFounder of Helix. “In less than a year, we have sequenced the DNA of thousands of study participants and are now preparing to offer this incredible study in other states. Combining environmental, clinical, social and genetic data allows us to discover risk factors within communities and help people take action to live longer, healthier lives. That’s what makes the next step of the Healthy USA Project so exciting for all of us. ”Full details on study’s evolution and southern Nevada enrollment will be revealed at a press event in Las Vegas on Tuesday, May 7 at 3 p.m. Renown Institute for Health Innovation Renown Institute for Health Innovation is a collaboration between Renown Health - a locally governed and locally owned, not-for-profit integrated healthcare network serving Nevada, Lake Tahoe and northeast California; and the Desert Research Institute - a recognized world leader in investigating the effects of natural and human-induced environmental change and advancing technologies aimed at assessing a changing planet. Renown IHI research teams are focused on integrating personal healthcare and environmental data with socioeconomic determinants to help Nevada address some of its most complex environmental health problems; while simultaneously expanding the state’s access to leading-edge clinical trials and fostering new connections with biotechnology and pharmaceutical companies. Learn more at https://healthynv.org/. Helix is a genomics company with a simple but powerful mission: to empower every person to improve their life through DNA. Our affordable, turnkey population health solution enables institutions to quickly scale projects that engage communities and accelerate research and discovery, ultimately allowing every person to benefit from the power of genomics. We've also created the first marketplace for DNA-powered products where people can explore diverse and uniquely personalized products developed by high-quality partners, providing powerful tools to increase engagement and speed the pace of population-scale genomics. Helix is headquartered in the San Francisco Bay Area, has an office in Denver, Colorado and operates a CLIA-certified and CAP-accredited next-generation sequencing lab in San Diego powered by Illumina (NASDAQ: ILMN) NGS technology. Helix was created in 2015. Learn more at www.helix.com. Helix, the Helix logo and Exome+ are trademarks of Helix Opco, LLC. All other trademarks referenced herein are the property of their respective owners. Additional Media Contacts: Tracy Bower DRI 702-862-5404 media@dri.edu Eric Schubert Seismic for Helix 415-939-4366 press@helix.com
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Nonalcoholic Liver Disease and Genetics: Is There a Link?
What exactly is the relationship between genetics and disease? Powered by Renown Health, the Healthy Nevada Project is one of the most visible genomic studies in the United States. They are recruiting participants here in northern Nevada to understand the relationship between genetics and nonalcoholic liver disease. Joseph Grzymski, Principal Investigator at the Healthy Nevada Project and Chief Scientific Officer at Renown Health, shares why this study is so important and who should take part. Many people are aware that heavy drinking can lead to liver disease. Yet they are unaware that other types of liver disease are not caused by alcohol consumption. These types of liver disease are more difficult to diagnose but are equally dangerous. What is NASH? A build-up of fat causes nonalcoholic Fatty Liver Disease (NAFLD) in the liver. The most dangerous form is called Nonalcoholic Steatohepatitis (NASH). It causes inflammation and damages liver cells, leading to fibrosis, scarring of the liver, and decreased liver function. If NASH goes untreated, irreversible liver damage can occur, leading to cirrhosis, cancer, or liver failure. These conditions can be fatal. What’s most concerning about NASH is that the symptoms don’t typically cause pain and aren’t noticeable. The good news is that a new local study is raising awareness about this disease by recruiting at-risk people for NASH. Am I at risk for developing NASH? The following factors put you at risk: Obesity Type 2 diabetes Metabolic syndrome High blood lipids, such as cholesterol and triglycerides Does having a family member with nonalcoholic liver disease increase my risk? We do not know a lot about inheriting NASH, although a lot risk factors run in families. One goal of this study is to better understand the genetic component of NASH. There are certainly other risks too, such as environmental and behavioral risk factors. However, we don’t yet have a good grasp on how these impact NASH risk. How is NASH diagnosed? Diagnosis is traditionally done with either a liver ultrasound or biopsy. However, both procedures are expensive and the invasive biopsy has risks. Therefore doctors often use risk factors or less invasive blood tests for diagnosis. This NASH study will include a new blood test called the enhanced liver function (ELF) test. Doctors and researchers have data suggesting that the ELF test is a better diagnostic test for NASH risk. Conducting this cutting-edge test with study participants allows them to share results with their doctors to ensure the best care. What can I do to reduce my NASH risk? Limiting exposure to the risk factors of NASH often lowers risk. Eating a healthy diet, maintaining a recommended weight and exercising regularly can proactively lower your risk.
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