2019 Speakers and Panelists:
Some of our featured speakers. There are more to come!
Katie Baca-Motes is the Director of The Participant Center for the All of Us Research Program, at Scripps Research Translational Institute (SRTI), where she manages the All of Us Research Program Direct Volunteer outreach, enrollment and retention, the Digital Health Technology team, the Support Center, and the Wearable, Salivary DNA and DV EHR Pilot programs. Baca-Motes’s past experience includes managing behavioral research projects with SRTI, Walt Disney Company, Aetna, Janssen, and others. The research projects have leveraged insights from behavioral economics and other social sciences to improve clinical trial enrollment, increase the return on incentive schemes, understand the psychology behind consumer decisions, identify effective donor communication, increase the effectiveness of corporate wellness programs and improve patient outcomes.
Eva Barbarossa leads the design research team for Wondros’ NIH All of Us experience team, where they seek a deeper understanding of why participants, researchers and healthcare professionals engage in research programs, how they wish to be engaged with, and what they need to stay involved for the long term. The team engages in a broad research program to gather insights and provide recommendations using a user- (and system-) centered design philosophy, and to support the many teams working to create these experiences. She has been working for healthcare and medical clients for nearly twenty years, supporting enhanced outcomes across the spectrum of health applications and experiences, as a researcher, designer, and strategist. Eva is the author of the Object Lesson’s book Magnet (Sept. 2019), a cultural history of the magnet and magnetism, and writes about language, culture, technology and ethics.
Christine L. Borgman, Distinguished Research Professor and Director of the Center for Knowledge Infrastructures at UCLA, is the author of more than 250 publications in information studies, computer science, and communication. She is a Fellow of the American Association for the Advancement of Science and of the Association for Computing Machinery. Her activities in information policy include service on the Advisory Board of the Electronic Privacy Information Center (EPIC); the University of California Privacy and Information Security Initiative; UC Academic Computing and Communications Committee (Vice Chair / Chair); UC Cyber Risk Governance Committee; UCLA Board on Privacy and Data Protection; and UCLA Data Governance Task Force (Co-Chair). Prof. Borgman earned a PhD in Communication from Stanford University, an MLS in information science from the University of Pittsburgh, and a B.A. in mathematics from Michigan State University. She also holds the title of University of California Presidential Chair in Information Studies, Emerita.
Brian Bot is Principal Scientist and Head of Outreach and Strategic Development at Sage Bionetworks. Previously, he worked for seven years as a statistician at the Mayo Clinic primarily in cancer clinical trials and cancer genomics. He has extensive experience working with clinical and genomic data and has long had a passion for exploring ways to make science more open and transparent.
Carolina Botero is the CEO of the Colombian civil society digital rights organization Karisma Foundation. She is a researcher, lawyer, lecturer, writer, and consultant on topics related to law and technology. Botero works in the defense of human rights in technology environments, following debates on freedom of expression, privacy, access to knowledge and culture, social innovation, and ICT in technology. Karisma’s work includes social and gender perspectives. Botero strongly supports citizen participation through research as a key democratic value. She holds a master’s degree in international law and cooperation (VUB – Belgium), and a master’s degree in business and contracting law (2006, UAB – Spain). She frequently writes op-eds in two Colombian media outlets: El Espectador and La Silla Vacía.
Andy Coravos is the CEO/co-founder of Elektra Labs, building a digital medicine platform with an initial focus on digital biomarkers for decentralized clinical trials. Formerly, Andy was a Entrepreneur in Residence at the FDA. She serves on the board of the Digital Medicine Society (DiMe), and she’s an advisor to the Biohacking Village at DEF CON.
Cory Doctorow (craphound.com) is a science fiction author, activist, journalist and blogger — the co-editor of Boing Boing (boingboing.net) and the author of RADICALIZED and WALKAWAY, science fiction for adults, a YA graphic novel called IN REAL LIFE, the nonfiction business book INFORMATION DOESN’T WANT TO BE FREE, and young adult novels like HOMELAND, PIRATE CINEMA and LITTLE BROTHER and novels for adults like RAPTURE OF THE NERDS and MAKERS. He works for the Electronic Frontier Foundation, is an MIT Media Lab Research Affiliate, is a Visiting Professor of Computer Science at Open University, a Visiting Professor of Practice at the University of South Carolina’s School of Library and Information Science and co-founded the UK Open Rights Group. Born in Toronto, Canada, he now lives in Los Angeles.
Deborah Estrin is a Professor of Computer Science at Cornell Tech in New York City where she founded the Jacobs Institute’s Health Tech Hub. She holds The Robert V. Tishman Founder’s Chair, serves as an Associate Dean, and is a part-time Amazon Scholar. Her research interests are at the intersection of user-centric data applications, personalization, and privacy (TEDMED). Estrin co-founded the non-profit startup, Open mHealth and has served on several scientific advisory boards for early stage mobile health startups. Before joining Cornell University Dr. Estrin was the Founding Director of the NSF Center for Embedded Networked Sensing (CENS) at UCLA; pioneering the development of mobile and wireless systems to collect and analyze real time data about the physical world. Her honors include: ACM Athena Lecture (2006), Anita Borg Institute’s Women of Vision Award for Innovation (2007), The American Academy of Arts and Sciences (2007), The National Academy of Engineering (2009), The IEEE Internet Award (2017), and MacArthur Fellow (2018).
Peter Goodhand is the Chief Executive Officer of the Global Alliance for Genomics and Health (GA4GH), as well as a leader in the global health sector as a senior executive and board member. Additionally, he has fifteen years of experience as a patient advocate, caregiver, and navigator throughout his family’s battle with a rare cancer. Goodhand is currently a member of the Occupational Cancer Research Centre Steering Committee, Co-Chair of the Medical and Scientific Advisory Board of Global Genes, Co-Chair of the International 100K+ Cohorts Consortium (IHCC), and a member of the Global Genomic Medicine Collaboration (G2MC) Steering Committee.
Kathy L. Hudson, PhD, is a strategic advisor to nonprofits, biotech, and technology companies. She was founding CEO of the People-Centered Research Foundation, a nonprofit that leads PCORnet, a large national clinical research network. She stepped down in February 2019 after leading the transition into a new and sustainable phase. Dr. Hudson is the former Deputy Director for Science, Outreach, and Policy at the NIH. She led policy, legislation, communications, and outreach efforts, and served as senior advisor to the NIH director. She created major new strategic and scientific initiatives, including the BRAIN Initiative and the All of Us research program. She was a key force in modernizing the regulations governing human subjects research. Hudson holds a PhD in molecular biology from the University of California at Berkeley, an MS in microbiology from the University of Chicago, and a BA in biology from Carleton College.
Heather Joseph is the Executive Director of SPARC (the Scholarly Publishing and Academic Resources Coalition) where she leads the organization’s efforts to advocate for open sharing of research outputs including digital articles, data and educational resources. Joseph spent 15 years as a publishing executive at commercial and not-for-profit organizations before joining SPARC. She is recognized internationally an expert, speaker and writer on opening up access to knowledge and developing new models for scholarly communication to accelerate the advancement of science.
Clifford Lynch has been the executive director of Coalition for Networked Information (CNI) since 1997. CNI, jointly sponsored by the Association of Research Libraries and EDUCAUSE, includes about 200 member organizations concerned with the intelligent uses of information technology and networked information to enhance scholarship and intellectual life. CNI’s wide-ranging agenda includes work in digital preservation, data intensive scholarship, teaching, learning and technology, and infrastructure and standards development. Prior to joining CNI, Dr. Lynch spent 18 years at the University of California Office of the President, the last 10 as Director of Library Automation. Dr. Lynch, who holds a PhD in Computer Science from the University of California, Berkeley, is an adjunct professor at Berkeley’s School of Information.
Ken Mandl, MD, MPH, is director of the Computational Health Informatics Program at Boston Children’s Hospital and the Donald A.B. Lindberg Professor of Pediatrics and Professor of Biomedical Informatics at Harvard Medical School. In his work at the intersection of population and individual health, Dr. Mandl was a pioneer of the first personally controlled health record systems, and he co-developed SMART, an approach to enable a health app to access digital data and run anywhere in the health care system. He has received the Presidential Early Career Award for Scientists and Engineers and the Donald A.B. Lindberg Award for Innovation in Informatics.
Lara Mangravite, PhD, is President of Sage Bionetworks. This organization is focused on the development and implementation of practices for large-scale collaborative biomedical research. Our work is centered on new approaches to scientific process that use open systems to enable community-based research regarding complex biomedical problems. Previously, Dr. Mangravite served as Director of the Systems Biology research group at Sage Bionetworks where she focused on the application of collaborative approaches to advance understanding of disease biology and treatment outcomes at a systems level with the overriding goal of improving clinical care. Dr. Mangravite obtained a BS in physics from the Pennsylvania State University and a PhD in Pharmaceutical Chemistry from the University of California, San Francisco. She completed a postdoctoral fellowship in cardiovascular pharmacogenomics at the Children’s Hospital Oakland Research Institute.
Jasmine McNealy, JD, PhD, is on faculty at the University of Florida and is a fellow at the Berkman-Klein Center for Internet & Society and the Digital Civil Society Lab. She studies media, information, and emerging technology, with a view toward influencing law and policy. She earned a PhD in mass communication and a JD at the University of Florida, and a BS in both journalism and Afro-American studies at the University of Wisconsin.
As the Vice President of Systems Biology, Larsson Omberg oversees a research agenda that focuses both on genomics and participant centered research where data is being collected using remote sensors and mobile phones. The group focuses heavily on using open and team based science to get a large number of external partners to collaborate on data intensive problems. Dr. Omberg has a background in computational biology and has been developing computational methods for genomics analysis and disease modeling. Dr. Omberg obtained a MSc in engineering physics from the Royal Institute of Technology in Stockholm Sweden and a PhD from the University of Texas at Austin in physics before performing a postdoctoral fellowship in computational biology and biostatistics at Cornell University.
Eric Schadt is the Dean for Precision Medicine and Mount Sinai Professor in Predictive Health and Computational Biology at the Icahn School of Medicine at Mount Sinai. He was previously Founding Director of the Icahn Institute for Genomics and Multiscale Biology, and Professor and Chair of the Department of Genetics and Genomic Sciences. Dr. Schadt is also founder and CEO of Sema4, a patient-centered predictive health company. He is an industry leader in network biology with numerous high-profile publications over the past five years and is the Editor-in-Chief of the new journal Open Network Biology. Schadt was a founding member of Sage Bionetworks, Chief Scientific Officer at Pacific Biosciences, and Executive Director of Genetics and Chief Scientist at Rosetta Inpharmatics/Merck Research, where he founded its Research Genetics Department after Rosetta was acquired by Merck in 2001. His extensive applications in systems biology have helped define the genetics of gene expression as a new field in statistical genetics. Prior to joining Rosetta, Dr. Schadt was a Senior Research Scientist at Roche Bioscience. He received his BS in applied mathematics/computer science from California Polytechnic State University, and his MA in pure mathematics and his PhD in bio-mathematics from UCLA
Avery Sen, PhD, is Chief Innovation Officer and co-founder at Sen Sound, and Project Leader at SRI International’s Center for Innovation Strategy and Policy. Through strategic planning and evaluation, Sen’s work centers on how innovation is a social practice of collective sense-making, shaped as much by our tools to share meaning as our tools to explore and build. Sen has a BA in science & technology studies from Cornell University, and an MA in international science and technology policy and a PhD in public administration from The George Washington University.
Yoko Sen is an ambient electronic musician and the founder of Sen Sound. Several years ago, Sen got sick and spent a lot of time in hospitals as a patient. As a classically trained musician, sensitive to sound, she was disturbed by noise – in particular, the cacophony of medical alarms beeping in dissonance. Since then, she has embarked on a mission to transform sound experience in hospitals, with the focus of reducing the negative impact of noise on the clinicians’ well being. Sen is a former Citizen Artist Fellow at The John F. Kennedy Center for The Performing Arts in Washington, DC. Sen Sound has partnered Johns Hopkins Sibley Memorial Hospital and Kaiser Permanente’s KP Innovation, collaborated with IDEO, Stanford Medicine X, and Medtronic, and its work has been featured in TEDMED, BBC, and US News and World Report.
Katindi Sivi-Njonjo is the founder of LongView Consult and currently the lead consultant of the firm. She works with a team of associates on a project by project basis depending on the expertise required to accomplish particular tasks. Prior to founding LongView Consult, Katindi served as the Programme Director at the Society for International Development (SID), an international organization that conducts research and facilitates development dialogue. Between 2002 and 2012, she was head of Futures at the Institute of Economic Affairs (IEA), a programme that focused on research, policy analysis and foresight. She holds an MSc in Organizational Development and a BA in International Relations (both from USIU). She also has training in Rural and Community Development (UoN), Scenarios Planning (University of Oxford, Said Business School) and Gender Budgeting. She is among the 5 top female futurists in Africa and among 167 world’s top female futurists.
Gustavo Stolovitzky is and IBM Fellow and the Director of the Translational Systems Biology and Nano-biotechnology Program at IBM Research, and an adjunct Professor at Columbia University. He has led many industry projects at IBM Research while also being heavily involved in academic pursuits through University collaborations. In 2006, Dr. Stolovitzky founded the DREAM Challenges, an open science effort that nucleates a community of researchers to assess the performance of systems biology methods, to foster collaborative models of research and to accelerate the solution of important translational problems. Besides the organization of scientific challenges, Dr. Stolovitzky has published over 150 papers and patented over 60 inventions on high-throughput biological-data analysis, reverse engineering biological circuits, the mathematical modeling of biological processes and nano-biotechnology. Dr. Stolovitzky joined IBM Research in 1998. Previously he was a postdoctoral researcher at the Center for Studies in Physics and Biology at The Rockefeller University. He received his PhD in mechanical engineering from Yale University (1994) and his MSc in physics from the University of Buenos Aires (1987). Dr. Stolovitzky has received Yale University’s Henry Prentiss Becton Prize award (1994), the HENAAC’s Pioneer Award for Great Minds in STEM (2013), the World Technology Awards (2013), and was distinguished as a Master Inventor in IBM Research (2013). He has been elected Fellow of the NY Academy of Sciences, Fellow of the World Technology Network, Fellow of the American Physical Society and Fellow of the American Association for the Advancement of Sciences. In 2019, he was appointed IBM Fellow, the highest technical honor awarded by IBM.
Dr. Carly Strasser is the Director of Alliances and Data Strategy at the Fred Hutchinson Cancer Research Center, where she develops partnerships internal and external to Fred Hutch to advance data-driven research. Throughout her career, she has been an open science advocate, working at the interface of researchers and those who support them. Dr. Strasser received a BA in marine science and a PhD in biological oceanography from the MIT/WHOI Joint Program.
Dario Taraborelli is a social computing researcher and an open knowledge advocate. As the Science Program Officer for Open Science at CZI, his goal is to build programs and technology to support open, reproducible, and accessible research. Prior to joining CZI, he served as the Director, Head of Research at the Wikimedia Foundation, the non-profit that operates Wikipedia and its sister projects. As a co-author of the Altmetrics Manifesto, a co-founder of the Initiative for Open Citations, and a long-standing open access advocate, he has been designing systems and programs to accelerate the discoverability and reuse of scientific knowledge by scholars, policy makers, and the general public alike.
Dr. Jennifer K. Wagner is associate director of bioethics research and assistant professor in the Center for Translational Bioethics & Health Care Policy at Geisinger, and is a licensed practicing attorney in Pennsylvania. She earned her JD at the University of North Carolina in 2007 and PhD in anthropology at Pennsylvania State University in 2010 before completing post-doctoral research appointments at Duke University’s Institute for Genome Sciences & Policy and the University of Pennsylvania’s Center for the Integration of Genetic Healthcare Technologies. Prior to joining Geisinger, Dr. Wagner served in a U.S. Senator’s office in Washington, DC, as a 2014-2015 AAAS Congressional Fellow. She is the 2019 chair of the ASHG Social Issues Committee and member of the AAPA Science Policy and Ethics Committees. Dr. Wagner’s research has been funded by the National Human Genome Research Institute.
John Wilbanks is the Chief Commons Officer at Sage Bionetworks. Previously, Wilbanks worked as a legislative aide to Congressman Fortney “Pete” Stark, served as the first assistant director at Harvard’s Berkman Center for Internet & Society, founded and led to acquisition the bioinformatics company Incellico, Inc., and was executive director of the Science Commons project at Creative Commons. In February 2013, in response to a We the People petition that was spearheaded by Wilbanks and signed by 65,000 people, the U.S. government announced a plan to open up taxpayer-funded research data and make it available for free. Wilbanks holds a BA in philosophy from Tulane University and also studied modern letters at the Sorbonne.
Kara Woo is a research scientist in data curation at Sage Bionetworks, where she builds tools to help researchers document and share their data. She previously combined data management with ecological fieldwork at a remote Siberian lake in her roles as information manager at Washington State University and at the National Center for Ecological Analysis and Synthesis (NCEAS). She holds an MLIS from the University of Washington and an ScB in environmental science from Brown University.