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All of Us Research Program Virtual Face-to-Face Meeting

All of Us Research Program Virtual Face-to-Face Meeting

Due to the current global health concerns related to COVID-19, this meeting will be held entirely online.

We look forward to hosting you! Register today to join us in December.

 

Face-to-Face Meeting

December 7–9, 2020

12:00–3:30 p.m.

 

Steering Committee Meeting

(closed)

December 11, 2020

3:00–5:00 p.m.


Speakers
  • Dean and M. David Low Chair of Public Health - The University of Texas Health Science Center at Houston (UTHealth) School of Public Health
  • Chief Experience Officer - All of Us Research Program
  • Director of the National Institutes of Health (NIH)
  • Chief Executive Officer - National Institutes of Health's All of Us Research Program
  • Deputy Director of Product - All of Us Research Program
  • Chief Operating Officer - All of Us Research Program at the National Institutes of Health
  • Acting Director of Division of Scientific Programs - All of Us Research Program
  • Product and Program Manager for the Division of Technology and Platform Development - All of Us Research Program
  • Retention Manager - All of Us SouthEast Enrollment Center
  • Director of Strategic Planning - All of Us Research Program
  • Engagement Specialist - All of Us Research Program
  • Lead Research Assistant/Communications at Cherokee Health Systems
  • Program Director for the Genome Center Awards - All of Us Genomics
  • Associate Dean for Informatics and Technology & the founding chair of the UCSD Health Department of Biomedical Informatics - UCSD
  • Genomics Program Director - All of Us Research Program
  • Communications Consultant - All of Us Research Program
  • Product Manager - All of Us Researcher Workbench
  • Acting Chief Medical and Scientific Officer - All of Us Research Program
  • Program Director in the Division of Genomic Medicine - National Human Genome Research Institute (NHGRI)

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Agenda

 

Meeting Location

LabRoots

Monday December 7 - Wednesday December 9

Meeting Agenda

 

Day 1—Monday, December 7, 2020

12:00 - 12:20 p.m.

Introduction and Keynote Address 

Moderator: Minnky Lee

Speaker: Francis Collins

12:20 - 12:45 p.m.

12:45 - 1:00 p.m.

Welcome & State of the Program

Priority Area Focuses

Josh Denny

Stephanie Devaney

1:00 - 1:15 p.m.

Q&A

Josh Denny & Stephanie Devaney

1:15 - 1:20pm

Singing/Guitar

Performer: Holly Dewolf

1:20 - 1:47 p.m.

Core Protocol: Overview of AoU Priorities

Moderator: Prachi Patel

Speaker: Sheri Schully

1:47 - 2:30 p.m.

Core Protocol Panel and Q & A

Moderator: Prachi Patel, Sheri Schully

Panel Members: Lucila Ohno-Machado, Eric Boerwinkle, Hoda Anton-Culver 

 

Day 2—Tuesday, December 8, 2020

12:00 - 12:05 p.m.

Poetry

Performer: Tiffany Meyer

12:05 - 12:40 p.m.

Enrollment and Retention: Overview of AoU Priorities

Moderator: Daozhong Jin

Speaker: Holly Garriock, John Chaffins

12:40 - 1:35 p.m.

Enrollment and Retention Panel and Q & A

Moderator: Daozhong Jin

Panelists: TBD

1:35 - 1:40 p.m.

 

Performer: B. Kim Andrews


 

Day 3—Wednesday, December 9, 2020

12:00 - 12:05 p.m.

Duet

Performer: Rachele Peterson & Mark Begale

12:05 - 12:32 p.m.

Genomics: Overview of AoU Priorities

Moderator: Debbie Isbell

Speaker: Anastasia Wise

12:32 - 1:12 p.m.

Genomics Panel and Q & A

Moderator: Debbie Isbell

Panelists:Anastasia Wise, Anji Musick, Scott Topper, Debbie Nickerson, Brad Ozenberger

1:12 - 1:17 p.m.

Holiday Harpsichord

Performer: Patricia Izbicki

1:17 - 1:44 p.m.

Research Hub: Overview of AoU Priorities

Moderator: Debbie Isbell

Speaker: Romey (Romuladus) Azuine

1:44 - 2:30 p.m.

Research Hub Panel and Q & A

Moderator: Debbie Isbell

Panelists: Kelsey Mayo, Shimon Rura, Romey Azuine

 

Exhibits

2:30–3:30 p.m. Daily

Booth

Topics

Core Protocol

Nutrition, Social Determinants of Health, PPI Modules

Diversity

Registration required; brainstorming sessions

Enrollment and Retention

Pediatrics; Personalized Participation

Genomics

Consent, Return of Results, GEM, 

Research Hub

Workbench enrollment, FAQ

 

 

 

 

Speakers

  • Eric Boerwinkle
    Dean and M. David Low Chair of Public Health - The University of Texas Health Science Center at Houston (UTHealth) School of Public Health
    Biography

      Eric Boerwinkle is dean and M. David Low Chair of Public Health at The University of Texas Health Science Center at Houston (UTHealth) School of Public Health. He joined the UTHealth faculty in 1986 and served as chair of the Department of Epidemiology, Human Genetics and Environmental Health at UTHealth School of Public Health from 2003-2015. He has also directed the Human Genetics Center at the School of Public Health and the Brown Foundation Institute for Molecular Medicine (IMM) for the Prevention of Human Diseases, which are a part of UTHealth.

      Author of more than 800 scientific papers, Boerwinkle has led groundbreaking research on the connection between genes and health. He and his colleagues completed the world’s first genome-wide analyses for a variety of cardiovascular disease risk factors, including hypertension and diabetes. These investigations have been a critical step in developing drugs that lower disease risk. Boerwinkle has served on several national research panels, including the Advisory Council for the National Human Genome Research Institute and the Board of External Advisors for the National Heart, Lung and Blood Institute, part of the National Institutes of Health.

    • John Chaffins
      Chief Experience Officer - All of Us Research Program
      Biography

        John Chaffins is the Chief Experience Officer for the All of Us Research Program, where he leads efforts to design informative, innovative, and engaging on and offline experiences for participants and researchers interested and/or enrolled in the program. Prior to this role, John served as the director of health innovation design at Wondros, where he led teams that defined, designed, and created custom online environments that forged meaningful, creative, and healthy relationships amongst diverse stakeholders. John led Wondros design efforts with the Collaborative Chronic Care Network (C3N) at Cincinnati Children’s Hospital Medical Center, where ethnography-based behavior design has helped inform the creation of digital tools that allow a nationwide network of patients, family members, physicians, and researchers to collaborate and improve the care of children with Crohn’s disease.

        Before joining Wondros, John applied his extensive background in health information management and technology to design, develop, and implement systems that allowed physicians to receive real-time data about their patients in a network of more than 320 acute care hospitals across the country. He has also held directorships at Cross Country Healthcare and JFK Medical Center, among other prominent health care organizations. John has a degree in health information management from The Ohio State University.

      • Francis Collins, MD, PhD
        Director of the National Institutes of Health (NIH)
        Biography

          Francis S. Collins, M.D., Ph.D., was appointed the 16th Director of the National Institutes of Health (NIH) by President Barack Obama and confirmed by the Senate. He was sworn in on August 17, 2009. On June 6, 2017, President Donald Trump announced his selection of Dr. Collins to continue to serve as the NIH Director. In this role, Dr. Collins oversees the work of the largest supporter of biomedical research in the world, spanning the spectrum from basic to clinical research.

          Dr. Collins is a physician-geneticist noted for his landmark discoveries of disease genes and his leadership of the international Human Genome Project, which culminated in April 2003 with the completion of a finished sequence of the human DNA instruction book. He served as director of the National Human Genome Research Institute at NIH from 1993-2008.

          Before coming to NIH, Dr. Collins was a Howard Hughes Medical Institute investigator at the University of Michigan. He is an elected member of the National Academy of Medicine and the National Academy of Sciences, was awarded the Presidential Medal of Freedom in November 2007, and received the National Medal of Science in 2009. In 2020, he was elected as a Foreign Member of the Royal Society (UK) and was also named the 50th winner of the Templeton Prize, which celebrates scientific and spiritual curiosity.

        • Joshua Denny, MD, MS
          Chief Executive Officer - National Institutes of Health's All of Us Research Program
          Biography

            Josh Denny, M.D., M.S., is the Chief Executive Officer of the National Institutes of Health’s All of Us Research Program. He has been involved in All of Us from its inception, first as a member of the Advisory Committee to the (NIH) Director Precision Medicine Initiative Working Group, which developed the program’s initial scientific blueprint. He led the program’s initial prototyping project and served as the principal investigator for the All of Us Data and Research Center.

            As a physician scientist, Josh is deeply committed to improving patient care through the advancement of precision medicine. Before joining the NIH, Josh was a Professor of Biomedical Informatics and Medicine, Director of the Center for Precision Medicine, and Vice President for Personalized Medicine at Vanderbilt University Medical Center. In his roles at VUMC, he was both a practicing internist and a researcher. His research interests include use of electronic health records (EHRs) and genomics to better understand disease and drug response. He also led efforts implementing precision medicine to improve patient outcomes. Josh was a leader in the development of phenome‐wide association studies (PheWAS) and phenotype risk scores.

            He served as PI for Vanderbilt sites in the Electronic Medical Records and Genomics (eMERGE) Network, Pharmacogenomics Research Network (PGRN), and the Implementing Genomics Into Practice (IGNITE) Network. He is an elected member of the National Academy of Medicine, the American Society for Clinical Investigation, and the American College of Medical Informatics.

          • Holly DeWolf
            Deputy Director of Product - All of Us Research Program
            Biography

              Holly is the Deputy Director of Product for the All of Us Research Program. Her product experience is varied, from ballistic missile control centers to enterprise master data management tools to healthcare provider survey tools. The common thread through all of these products is a desire to solve real problems with thoughtfully designed products that serve their users and leave the world a better place.

              Holly's curiosity extends outside of work. She is a multipotentialite, which means that she switches hobbies about every 3 months, but some of her longest standing hobbies include: performance theater, dance, music, running, rock climbing, cycling and anything DIY. Ask her about her latest project: the camper van.

            • Stephanie Devaney, PhD
              Chief Operating Officer - All of Us Research Program at the National Institutes of Health
              Biography

                Stephanie Devaney, Ph.D., is the Chief Operating Officer of the All of Us Research Program at the National Institutes of Health. In this role she is responsible for overseeing the operations of the All of Us Research Program to ensure the program fulfills its mission of advancing precision medicine research. Prior to this she led the coordination of the Precision Medicine Initiative (PMI) from the Office of the Chief of Staff at the White House. In this role she coordinated the many components of the Initiative and guided the vision of the overall effort, along with the many federal partners. Before joining the White House, Stephanie worked in the Office of the Director at the National Institutes of Health. There she helped advance policies critical to biomedical research and the NIH mission and assisted in the development of programs and research initiatives to advance national scientific priorities. Stephanie received her Ph.D. in molecular genetics from the George Washington University and her B.S. in biology from The Ohio State University.

              • Holly Garriock, PhD
                Acting Director of Division of Scientific Programs - All of Us Research Program
                Biography

                  Holly A. Garriock, Ph.D., is the Acting Director of Division of Scientific Programs for the All of Us Research Program. Holly came to the program from the National Institute of Mental Health, where she managed a research portfolio of child and adolescent depression, anxiety, suicide, and trauma that supported her growth and expertise in the fields of child development and mood disorders. Holly did her undergraduate training in Canada; graduate training at the University of Arizona, where she received her Ph.D. in genetics; and postdoctoral research at the University of California, San Francisco.

                • Debbie Isbell, MA
                  Product and Program Manager for the Division of Technology and Platform Development - All of Us Research Program
                  Biography

                    Debbie Isbell, M.A., is a Product and Program Manager for the Division of Technology and Platform Development in the All of Us Research Program. She serves as the technical team lead for the AoU Genomics campaign and manages participant-facing initiatives supported by the Participant Technology Systems Center award. She has 20 years of extramural program management experience with the NIH Office of the Director. Debbie holds a B.A. in Psychology from the University of Pennsylvania and an M.A. in Clinical Psychology from the Hebrew University of Jerusalem.

                  • Patricia Izbicki
                    Retention Manager - All of Us SouthEast Enrollment Center
                    Biography

                      Dr. Patricia Izbicki is the Retention Manager for the All of Us SouthEast Enrollment Center. Along with her role at All of Us, her research focuses on understanding the brain mechanisms of complimentary therapies in aging adults and persons with neurodegenerative diseases. Her doctoral work focused on cognitive and motor inhibitory control in aging musicians and non-musicians to ultimately guide in designing accessible and evidence-based music interventions.

                      Dr. Izbicki is a TEDx speaker, Iowa Woman of Innovation, National Science Foundation Science Communication Fellow, Wakonse Teaching Fellow, and Iowa State University Focus Artist. She served on the Society for Neuroscience Trainee Advisory Committee and is former president of the Society for Neuroscience Ames Chapter.

                    • Daozhong Jin
                      Director of Strategic Planning - All of Us Research Program
                      Biography

                        Daozhong Jin is the Director of Strategic Planning for the All of Us Research Program. In this role, she works closely with the All of Us leadership to support the program’s strategic and long-range goal setting and planning efforts. She previously supported the program’s national communications, marketing, and engagement efforts through her roles as the communications advisor to the CEO and the tribal engagement team lead.

                        Prior to joining All of Us, Daozhong helped launch the NIH Outreach Office to support the Office of the Director’s efforts to build relationships and improve communications with key stakeholders. She has also worked on fundraising, marketing, and public interest campaigns for nonprofit organizations.

                      • Minnkyong Lee
                        Engagement Specialist - All of Us Research Program
                        Biography

                          Minnkyong Lee (Minnky) is an Engagement Specialist with the All of Us Research Program. She has been with the program since May 2017 primarily working with awardees to identify and disseminate best practices in the engagement and retention of participants and their communities. She came to All of Us from the National Human Genome Research Institute (NHGRI) where she was a postdoctoral researcher. There, she examined the roles of novel metastasis suppressors in breast and prostate cancer using animal models and big data. In addition to her research, Minnky has always demonstrated a strong passion for science education and outreach, which led to teaching and volunteering at various local institutions, including the Koshland Science Museum, Northern Virginia Community College, and University of Maryland. A detail with the Education and Community Involvement Branch at NHGRI near the end of her postdoctoral training led her to her current position with the All of Us Division of Engagement. Her combined experiences in both the laboratory and diverse communities bring a unique perspective to the program in engagement science. Minnky received her Ph.D. in biomedical sciences with a concentration in chromatin biology from Rutgers University and her B.S. in biology from Ewha Womans University in Seoul, Korea.

                        • Tiffany Meyer
                          Lead Research Assistant/Communications at Cherokee Health Systems
                          Biography

                            Tiffany Meyer is a Lead Research Assistant/Communications at Cherokee Health Systems. She attended the University of Tennessee, Knoxville where she earned her B.A. in English with an emphasis on Creative Writing and a Minor in Business, and later took additional science classes. Creating poetry has been a passion of hers for as long as she can remember. Lyrics and verses would pop into her head as a small child as she danced around. She has published one piece of poetry in a book with many other poets. Currently, she is working on a collaboration of works. Poetry has been a way to create and reflect about the world around.

                          • Anji Musick, MPH, PhD
                            Program Director for the Genome Center Awards - All of Us Genomics
                            Biography

                              Dr. Anji Musick (Addington) joined NIMH as an intramural staff scientist in 2002, where she led the genetics research program in the Child Psychiatry Branch, primarily focusing on the genetics of childhood onset schizophrenia and other severe neurodevelopmental disorders. In 2012, Anji moved to the extramural program at NIMH, administering the Genetics of Mental Illness and Genetic Epidemiology Programs and served as the Branch Chief of the Genomics Research Branch in the Division of Neuroscience and Basic Behavioral Science from 2015-2020. Anji led many large collaborative efforts in her time at NIMH such as the Whole Genome Sequencing for Psychiatric Disorders Program (WGSPD), psychENCODE, psychEMERGE, as well as serving as liaison across NIH and other agencies for special initiatives. In January 2020, Anji joined the All of Us Genomics team as the Program Director for the Genome Center awards. After receiving her B.A. in Psychology from University of Virginia, Anji conducted research on the molecular genetics of type 2 diabetes as a pre-doctoral research fellow at NHGRI for two years. Anji received her M.P.H. and Ph.D. in Genetic Epidemiology from the Johns Hopkins Bloomberg School of Public Health.

                            • Lucila Ohno-Machado, MD, MBA, PhD
                              Associate Dean for Informatics and Technology & the founding chair of the UCSD Health Department of Biomedical Informatics - UCSD
                              Biography

                                Lucila Ohno-Machado, M.D., M.B.A., Ph.D., received her medical degree from the University of São Paulo and her doctoral degree in medical information sciences and computer science from Stanford. She is Associate Dean for Informatics and Technology, and the founding chair of the UCSD Health Department of Biomedical Informatics at UCSD, where she leads a group of faculty with diverse backgrounds in medicine, nursing, informatics, and computer science. Also, she is the PI for the California Precision Medicine Consortium for the NIH All of Us Research Program. Prior to her current position, she was faculty at Brigham and Women’s Hospital, Harvard Medical School and affiliated with the MIT Division of Health Sciences and Technology. Dr. Ohno-Machado is an elected member of the American College of Medical Informatics, the American Institute for Medical and Biological Engineering, the American Society for Clinical Investigation and the National Academy of Medicine. She served as editor-in-chief for the Journal of the American Medical Informatics Association from 2011 to 2018. She directs the patient-centered Scalable National Network for Effectiveness Research, a large clinical data research network covering more than 30 million patients and 12 healthcare systems, and was one of the founders of UC-Research eXchange, a clinical data research network that connected the data warehouses of the five University of California medical centers. She was the director of the NIH-funded National Center for Biomedical Computing iDASH (integrating Data for Analysis, ‘anonymization,’ and Sharing) based at UCSD with collaborators in multiple institutions, as well as other NIH-funded consortia and research projects. Her research focuses on privacy-preserving distributed analytics for healthcare and biomedical sciences. She has received numerous awards for innovations in biomedical informatics.

                              • Brad Ozenberger, PhD
                                Genomics Program Director - All of Us Research Program
                                Biography
                                  Brad Ozenberger, Ph.D., is the genomics program director for the All of Us Research Program, with primary responsibilities in the areas of genetic analysis and data management. Brad is an expert in genomic sequencing and analysis methods. His research emphasis over this decade has been on effective and responsible use of genomic sequencing in medicine. Brad brings a diverse wealth of experience to the program with a career path through the NIH, academia, and industry. Brad was most recently an assistant professor of medicine at the Washington University in St. Louis School of Medicine. Formerly, he served as the deputy director of the Division of Genomic Medicine at the National Human Genome Research Institute, where he directed the Clinical Sequencing Exploratory Research Program supporting investigations of the practical and the psychosocial implications of introducing genome sequencing into clinical practice. He also was co-director of the Cancer Genome Atlas. Prior to joining the NIH, Brad was a distinguished scientist at Wyeth Pharmaceuticals in Princeton, New Jersey. He received a Ph.D. from the University of Missouri School of Medicine and obtained further training as a postdoctoral fellow in the Department of Biology at Yale University.
                                • Prachi Patel
                                  Communications Consultant - All of Us Research Program
                                  Biography

                                    Prachi Patel is a communications consultant with the All of Us Research Program who joined the program in September 2017 through a contract with Palladian Partners to spearhead special initiatives. As the national launch event coordinator, she liaised with program staff and consortium members to plan for and execute the program’s nationwide, multi-site national launch on May 6, 2018. Prior to joining the All of Us team, Prachi was the communications director at the United States Agency for International Development Office of HIV/AIDS. She has almost 15 years of public health communications experience and has held communications positions at NIH’s National Center for Complementary and Integrative Health, the Department of Veterans Affairs Office of Public Health, and the American Urological Association. Prachi holds a B.S. in mass communications with a concentration in public relations from Boston University.

                                  • Shimon Rura
                                    Product Manager - All of Us Researcher Workbench
                                    Biography

                                      Shimon Rura is a product manager at Verily focused on the All of Us Researcher Workbench. He has a background in software engineering and product management, including health tech for consumers and researchers as well as education and media. Prior to All of Us, he worked on Verily's disease management products for Diabetes and Mental Health. He holds a B.A. in Computer Science from Williams College.

                                    • Sheri Schully, PhD
                                      Acting Chief Medical and Scientific Officer - All of Us Research Program
                                      Biography

                                        Sheri Schully, Ph.D., is the Acting Chief Medical and Scientific Officer of the All of Us Research Program. Prior to this role, she was a Team Lead and Senior Advisor for Disease Prevention in the Office of Disease Prevention (ODP). There, she led the effort to systematically monitor NIH investments in prevention research and assess the progress of that research. She also served as the team lead for the Knowledge Integration Team as well as a Program Officer in the Epidemiology and Genomics Research Program at the National Cancer Institute (NCI). She came to NCI as a Presidential Management Fellow in 2005.

                                        Dr. Schully has authored or co-authored more than 70 papers, many focusing on the translation of genomic technologies into clinical and Public Health practice. She earned both a Ph.D. in biological sciences with a concentration in population genetics and a B.S. in zoology with a minor in chemistry from Louisiana State University.

                                      • Anastasia Wise
                                        Program Director in the Division of Genomic Medicine - National Human Genome Research Institute (NHGRI)
                                        Biography

                                          Dr. Wise is a program director in the Division of Genomic Medicine at the National Human Genome Research Institute (NHGRI). She received her Ph.D. in genetics and genomics from Duke University and joined NHGRI in 2010. At NHGRI she serves as project officer for programs advancing the application of genomics to medical science and clinical care with a focus on perinatal sequencing, undiagnosed and rare disease genomic medicine, and sex chromosome analysis and association methods. Dr. Wise serves as co-coordinator and program director for the NIH Common Fund's Undiagnosed Diseases Network, which aims to form a sustainable national resource to diagnose both rare and previously undiagnosed diseases through team science. She is also a project scientist for the Newborn Sequencing in Genomic Medicine and Public Health (NSIGHT) program, which aims to explore the potential implications, challenges and opportunities associated with the possible use of genomic sequence information in the newborn period. Her other research interests include gene-environment interactions in complex disease, pharmaco/toxicogenomics, and ethical, legal, and social issues related to the use of genetic information.

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