UVMHN LunaDNA

University of Vermont Health Network begins offering Genomic DNA Testing

Pilot project holds promise for helping inform Vermonters’ health care decisions

BURLINGTON — The University of Vermont Health Network has begun a pilot project to offer Genomic DNA Testing to patients as part of their clinical care. The pilot program is the beginning of an effort to increase the integration of genetic disease risks into routine medical care, which holds promise for providing Vermonters with valuable information to guide their health decisions.

Our overall health and longevity are determined about 30 percent by genetics,” said Debra Leonard, MD, PhD, Chair, Pathology and Laboratory Medicine. “But until now, most of our clinical health care decisions have been made without understanding the differences in each individual’s DNA that could help guide those decisions.”

Patients who choose to get the Genomic DNA Test can learn about differences in their DNA that make certain diseases more likely, such as cancer and heart disease. Knowing these genetically-determined disease risks may help patients and health care providers adjust their care to keep people as healthy as possible. While genetic testing to identify the cause of a patient’s symptoms to reach a diagnosis is now common in health care, proactive genomic testing to identify health risks across a population is just beginning to be considered, and most projects are being done only in the research setting.

The UVM Health Network is partnering with Invitae and LunaPBC on the pilot project. Invitae will provide information for 147 genes that are well-established indicators of increased risk for certain diseases for which clinical treatment guidelines are established. The test also screens for carrier status for other diseases. Follow-up testing for family members will be provided when appropriate.

Nearly 1 in 6 healthy individuals exhibits a genetic variant for which instituting or altering medical management is warranted,” said Robert Nussbaum, MD, Chief Medical Officer of Invitae. “Genetic screening like the Genomic DNA Test in a population health setting can help identify these risk factors so clinicians can better align disease management and prevention strategies for each patient.”

The UVM Health Network is offering the Genomic DNA Test as part of clinical care, but health and genomic data can also help researchers learn more about health and disease. Patients who get the test can consent to securely share their data with researchers through LunaDNA, partner LunaPBC’s sharing platform. LunaDNA provides patients with the opportunity to share their genomic and electronic health record information to advance health and disease management research. In the future, patients will also be able to share lifestyle, environment, and nutrition data. Shared data is de-identified and aggregated during studies to protect the privacy of each patient while being used to answer important medical research questions.

Vermonters who choose to share their genomic data for research will play a leading role in the advancement of precision medicine,” said Dawn Barry, LunaPBC President and Co-founder. “This effort puts patients first to create a virtuous cycle for research that doesn’t sacrifice patients’ control or privacy. We are proud to bring our values as a public benefit corporation and community-owned platform to this partnership.”

Dr. Leonard spoke about the project, the UVM Health Network’s partnership with LunaPBC and Invitae, and the role of genomics in population health on Monday at the Santa Fe Foundation’s Clinical Lab 2.0 Workshop in Chicago, a national conference at which pathologists and healthcare leaders from across the country share ways that pathology can be integral to improving population health.

Vermont and other states are moving away from ‘fee-for-service’ health care and toward a system that emphasizes prevention, keeping people healthy and treating illness at its earliest stages,” Dr. Leonard said. “Integrating genetic risks into clinical care will help patients and providers in their decision-making.”

The pilot project began on Friday, November 1, when the first patient agreed to have the test. During the pilot stage of the project over the next year, the Genomic DNA Test will be offered to approximately 1,000 patients over the next year who: are at least 18 years old; receive their primary care from a participating UVM Health Network Family Medicine provider; are not currently pregnant or the partner of someone who is currently pregnant; and are part of the OneCare Vermont Accountable Care Organization (ACO), a care coordination and quality improvement organization.

Patients do not have to pay for the test or for discussions with the UVM Health Network’s Genomic Medicine Resource Center’s genetic counselors before and after testing. The test uses a small amount of blood, and focuses on the parts of a patient’s DNA that most affect health and health care. Results will go into each patient’s medical record, protected like all medical information, and available to the patient and all of their health care providers.

Much work has gone into getting ready to start this project and it has taken an entire team,” Dr. Leonard said. “Providers from Family Medicine, Cardiology, the Familial Cancer Program, Medical Genetics and Pathology, patient and family advisors, ethics and regulatory compliance leaders, Planning, Finance and OneCare Vermont have all worked together to get us across the start line for this initiative.”

Patients should be aware that the UVM Health Network will never call them on the phone to ask them to get this test. Testing is arranged through a patient’s primary health care provider and only if the patient agrees to have the test.

About The University of Vermont Health Network
The University of Vermont Health Network is an academic health system comprised of six affiliate hospitals, a multi-specialty medical group, and a home health agency. We serve the residents of Vermont and northern New York with a shared mission: working together, we improve people’s lives. Our 4,000 health care professionals are driven to provide high-quality, cost-efficient care as close to home as possible. Strengthened by our academic connection to the University of Vermont, each of our hospitals remains committed to its local community by providing compassionate, personal care shaped by the latest medical advances and delivered by highly skilled experts.

About Invitae
Invitae Corporation (NYSE: NVTA) is a leading genetics company, whose mission is to bring comprehensive genetic information into mainstream medicine to improve healthcare for billions of people. Invitae’s goal is to aggregate the world’s genetic tests into a single service with higher quality, faster turnaround time, and lower prices. For more information, visit the company’s website at invitae.com.

About LunaPBC
Public Benefit Corporation, LunaPBC, is a private investor-owned company founded in November 2017. It is chartered to drive societal value through the aggregation and organization of genomic and health data at a scale and diversity rich enough to solve today’s greatest health challenges. LunaPBC founded LunaDNA, the first people-powered, community-owned data sharing platform. The LunaPBC team, investors, and advisors are renowned in the patient-advocacy, health, and science fields, including several former chief executives of Illumina, industry academics, and financial executives. For more information visit www.lunadna.com.

LunaPBC Partners With Medfusion

LunaPBC Partners with Medfusion to Launch Electronic Health Record Integration, Supporting Community-Driven Research

San Diego, Calif. | September 10, 2019 | 8:00 a.m. PT LunaPBC, founder of LunaDNA, the first community-owned genomic and health data platform — now enables members to access their electronic health records (EHRs) in the LunaDNA platform via Medfusion’s Patient Data Application Program Interfaces (APIs). This integration expands individual’s opportunities to easily and securely share their health data to advance scientific discovery using their own medical history.

EHRs are rich with health information, including family history of chronic disease, recent diagnoses and illnesses, as well as laboratory results. This information is valuable to researchers and the medical community to support scientific advances, but it is often not easily accessible outside of the patient’s health system. A lack of interoperability between health systems means these systems rarely communicate with one another, leaving patients with partial or even no access to a comprehensive record of their health. Consequently, 32 percent of individuals have experienced gaps in the exchange of their health information when they visit their provider.

LunaDNA’s addition of EHR integration allows its members to easily capture, review, and privately share their de-identified medical histories in LunaDNA. This capability enriches the database with standardized medical data and enables new discoveries by not-for-profits, academic institutions and pharmaceutical companies. Prior to these groups gaining access to the database for research, they are vetted by an ethics review board to comply with LunaPBC’s public benefit charter. LunaDNA members are always in control of their data on LunaDNA and can delete any portion or their complete EHR record at any time. In addition to EHR data, LunaDNA accepts data from DNA tests and real-world data from member surveys.

“Access to LunaDNA members’ medical journeys that are integrated with shared DNA information, allows the database to directly impact future research discoveries that accelerate an era of personalized health. Ensuring that each member is in full control of the use of their data creates a privacy framework that is centered on the individual,” said Scott Kahn, Chief Information Officer, LunaPBC. “Our work with Medfusion activates individuals as research partners and holds the promise of making discoveries inclusive and transparent.”

Medfusion features the broadest network of Health Data APIs—reaching 83 percent of the U.S. market with patients served by more than 700,000 providers. It allows for data retrieval across more than 40 different EHRs, enabling LunaDNA users to gather records from a broad range of providers, specialties and locations. The breadth and depth of the Medfusion network gives LunaDNA a powerful advantage in terms of data availability and patient experience.

“We immediately identified with LunaPBC’s mission of empowering patients with their own health data and being able to do more with that data,” said Ryan Magnes, executive vice president of growth and innovation, Medfusion. “The power of LunaDNA comes from putting the patient in the center — and using technology to connect and share their data for their own benefit, and for the benefit of others. The breadth of Medfusion’s network will enable users to get the most complete view of their health record.”

In addition to breaking down silos to advance medical research, individuals who submit their data are eligible for shares in LunaDNA. LunaDNA was granted precedent setting qualification from the U.S. Securities and Exchange Commission as the only company able to grant members ownership shares in exchange for their data. The monetary value of a LunaDNA share is expressed through dividends consistent with an individual’s ownership percentage. Holders of shares are able to increase their holdings by contributing more data, and the database becomes more valuable over time as research advances and medical discoveries are accelerated.

“There is a massive amount of data that would be invaluable to researchers if they were able to access it in a standardized format,” said Sharon Terry, President and Chief Executive Officer, Genetic Alliance. “In a world where medical records are increasingly complicated, it’s wonderful to see companies like Medfusion and LunaPBC working together to make it easier for both patients and researchers to access this information.”

Luna is bringing together individuals, communities, and researchers to better understand life. Directly drive health discovery by joining the Tell Us About You study. The more we come together to contribute health data for the greater good, the quicker and more efficient research will scale, and improve the quality of life for us all.  

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