Webinars, Publications & Presentations about Data Sharing

VIVLI WEBINARS

View Vivli’s webinars at your convenience by clicking on the links below:

DateWebinarSpeakers
April 2024The Potential Impact of Recent U.S. Legal Developments on Data Sharing with China and Other Countries of ConcernRebecca Li, Vivli
David Peloquin, Ropes & Gray
April 2023Recent Developments in Data Privacy Laws and their Impact on Data SharingRebecca Li, Vivli
David Peloquin, Ropes & Gray
Katherine Wang, Ropes & Gray
February 2023Submitting Your NIH Data Management and Sharing Plan using VivliAnne Seymour, Johns Hopkins University
Amy Nurnberger, Massachusetts Institute of Technology
John Borghi, Stanford University
Rebecca Li and Julie Wood, Vivli
November 2022Applying the SAFE Data Standard to Securely Share Clinical Trial DataLuk Arbuckle, Chief Methodologist, Privacy Analytics (an IQVIA company)
Stephen Bamford, Head of Clinical Data Standards & Transparency, Janssen Research and Development
Aaron Mann, CEO, Clinical Research Data Sharing Alliance

Moderated by:
Marcia Levenstein, Senior Advisor, Vivli
October 2022Mind the Data Sharing Gap: Navigating sponsor policies and data protection methodologiesLuk Arbuckle, Chief Methodologist, Privacy Analytics (an IQVIA company)
Liz Roberts, Senior Director, Data Policy and Privacy Lead, UCB

Moderated by:
Aaron Mann, CRDSA CEO
June 2022How Vivli Promotes Discoverability of Partner Platforms and RepositoriesIshwar Chandramouliswaran, NIH
Dawei Lin, ImmPORT
Ida Sim, UCSF and Vivli
June 2021Sharing Academic Clinical Research DataIda Sim, UCSF and Vivli
Dan Ford, Johns Hopkins University
Susanna Naggie, Duke University
Kim Serpico, Harvard T.H. Chan School of Public Health
Ara Tahmassian, Harvard University
March 2021Clinical Trial Data Sharing and Machine Learning ResearchIda Sim, UCSF and Vivli
Abigail Gregor, Ropes & Gray
Daniel Freshman, Ropes & Gray
September 2020Synthetic Data: How to preserve privacy of participants when sharing clinical dataPatrick Cullinan, Bluebird Bio
Khaled El Emam, Replica Analytics
Michael Lesh, Syntegra
July 2020Accelerating Science in the Age of COVID-19: Three Key Data InitiativesRebecca Li, Vivli
Elizabeth L. Ogburn, Dr. Barbara Bierer, COVID Collaboration Platform
Janice Chang, Cara Rinaldi, TransCelerate BioPharma, Inc
April 2020 Data Sharing and Data Anonymization: the Vivli-Privacy Analytics Partnership Rebecca Li
Niamh McGuinness
February 2020Future Directions: Real World Data, Real World Evidence and Clinical TrialsDr. Ida Sim
Marcia Levenstein
Dr. Gregory Pappas
Dr. Jack Mardekian
November 2019Credit for Data SharingDr. Barbara Bierer,
Ms. Heather Pierce
October 2019Why Data Sharing and Data Standardization MattersMr. David Bobbitt MSc, MBA
Dr. Ida Sim, MD, PhD
Dr. Rebecca Li
May 2019Top five questions small and mid-size companies should ask before embarking on a data sharing programDr. Rebecca Li
March 2019 Keys to Submitting a Quality Research Proposal to a Data Sharing PlatformMs. Cynthia Holas,
Dr. Sonali Kochhar,
Dr. Georgina Humphreys,
Dr. Joe Ross,
Ms. Ginger Gamble, MPH.

February 2019 Informed Consent and Data Sharing Dr. Barbara Bierer ,
Dr. Rebecca Li ,
Mr. David Peloquin,
Dr. Stephen Rosenfeld
January 2019How to Share and Request Data on VivliDr. Ida Sim, MD, PhD
November 2018 IPD Meta-Analysis Webinar Dr. Sarah Nevitt

PUBLICATIONS ABOUT DATA SHARING

Health Data Sharing Platforms: Serving Researchers through Provision of Access to High-Quality Data for Reuse

Rebecca Li, Nina Hill, Catherine D’Arcy, Amrutha Baskaran, Patricia Bradford, "Health Data Sharing Platforms: Serving Researchers through Provision of Access to High-Quality Data for Reuse", Health Data Science, vol. 2022, Article ID 9768384, 3 pages, 2022
COVID-19 interventional trials: Analysis of data sharing intentions during a time of pandemic

Kristina Larson, Ida Sim, Megan von Isenburg, Marcia Levenstein, Frank Rockhold, Stan Neumann, Catherine D'Arcy, Elizabeth Graham, David Zuckerman, Rebecca Li. COVID-19 interventional trials: Analysis of data sharing intentions during a time of pandemic. Contemporary Clinical Trials. 2022.

Sharing Health Data: The Why, the Will, and the Way Forward A Special Publication from the National Academy of Medicine

Whicher, D., M. Ahmed, S. Siddiqi, I. Adams, M. Zirkle, C. Grossmann, and K. L. Carman, Editors. 2021. Health Data Sharing to Support Better Outcomes: Building a Foundation of Stakeholder Trust. NAM Special Publication.Washington, DC: National Academy of Medicine.

New NonProfit Aims To Bring Data Transparency To Researchers
Move clinical trial data sharing from an option to an imperative
Timely access to trial data in the context of a pandemic: the time is now.

Li R, Wood J, Baskaran A, et al. Timely access to trial data in the context of a pandemic: the time is now. BMJ Open 2020; 10:e039326. doi: 10.1136/bmjopen-2020-039326
COVID-19 trials: declarations of data sharing intentions at trial registration and at publication

Li, R., von Isenburg, M., Levenstein, M. et al. COVID-19 trials: declarations of data sharing intentions at trial registration and at publication. Trials 22, 153 (2021). https://doi.org/10.1186/s13063-021-05104-z
Data Sharing Goals for Nonprofit Funders of Clinical Trials

Coetzee T, Ball M, Boutin M, Bronson A, Dexter DT, English RA, Furlong P, Goodman AD, Grossman C, Hernandez AF, Hinners JE, Hudson L, Kennedy A, Marchisotto MJ, Myers E, Nowell WB, Nosek BA, Sherer T, Shore C, Sim I, Smolensky L, Williams C, Wood J, Terry SF, Matrisian L
Data Sharing Goals for Nonprofit Funders of Clinical Trials J Particip Med 2021;13(1):e23011 doi: 10.2196/23011 PMID: 33779573

PRESENTATIONS

May 10-11, 2021"Considerations for Sponsors when using a Data Sharing Platform" and panel, "Balancing Sharing Results and Data Whilst Protecting Participants Data Privacy" at InformaConnect Clinical Data Disclosure, Transparency & Plain Language SummariesJulie Wood
Rebecca Li, PhD
May 5, 2021"Data Sharing in a Time of Pandemic", a webinar with Front Line GenomicsRebecca Li, PhD
April 12, 2021"Implementation of Data Sharing platforms and How Researchers are Utilizing these Platforms to Further their Research.", a webinar with the HRB-Trials Methodology Research NetworkRebecca Li, PhD
March 26, 2021"Acceleration of Research and Implications for Research Transparency." Center for Biomedical Research Transparency Summit SeriesIda Sim, MD, PhD
January 19, 2021"Data Sharing of Rare Disease Data – Challenges and Rewards." PHUSE Data Transparency Winter MeetingRebecca Li, PhD
December 11, 2020 "Vivli: A Global Clinical Trials Data Sharing Platform." dkNET webinarIda Sim, MD, PhD
November 6, 2020"Responsible Data-Sharing to Improve Research Integrity." European Medical Writers Association 2020 Virtual Symposium Julie Wood
October 16, 2020"Privacy Incoherence in Medicines: The Confluence of Corporate Trade Secret, Government Non-Transparency, and AI Mediated Erosion of Patient Privacy." Northeastern University's Center for Law, Innovation and Creativity Annual ConferenceRebecca Li, PhD
August 18, 2020"Platform Analytics Tools to Support Rare Disease Drug Development." FDA convening hosted by the Duke-Margolis Center for Health PolicyRebecca Li, PhD
April 24, 2020"Sharing, Discovering and Citing COVID-19 Data and Code." National Library of Medicine (NLM) at the National Institutes of Health (NIH)
Ida Sim, MD, PhD
February 11, 2020"Vivli Clinical Research Data Sharing: Share. Discover. Innovate." NIH Workshop on the Role of Generalist Repositories to Enhance Data Discoverability and Reuse, Bethesda MD
Ida Sim, MD, PhD
October 25, 2019 “Finding New Solutions to Problems and Concerns in Clinical Data Sharing – Outcomes from Datathon."DIA Future of Evidence WorkshopRebecca Li, PhD
October 10, 2019 "Clinical Trial Data Sharing and Reuse: A New Reality for Researchers." Clinical Data Interchange Standards Consortium WebinarIda Sim, MD, PhD
Rebecca Li, PhD
September 27 2019 "Preparing for clinical trial data sharing and re-use: the new reality for researchers." NIH Collaboratory Grand RoundsRebecca Li, PhD
Frank Rockhold, PhD
September 19, 2019“The Vivli Experience in Sharing Clinical Trial Data Globally.”OHRP Exploratory Workshop: Privacy & Health Research in a Data-Driven WorldRebecca Li, PhD
June 2019“Symposium SY13: Data sharing and responsible conduct of research: sharing industry experiences as part of the research transparency environment."World Conference in Research Integrity, Hong KongRebecca Li, PhD
March 27, 2019“Vivli: A Global Secure Data-Sharing Platform for Participant-Level Clinical Trial Data." Medical Informatics Association Summit, San Francisco CAIda Sim, MD, PhD
January 30, 2019“The Disclosure and Data Sharing Lifecycle.” CBI Clinical Data Disclosure and Transparency Conference, Philadelphia PAJulie Wood
Thomas Wicks (TrialScope)
October 25, 2018 "Sharing and Using Deidentified Individual Participant Data (IPD)." DIA Global Clinical Trials Transparency Conference, LondonRebecca Li, PhD
March 13, 2018“Vivli: A Global Secure Data Sharing Platform for Participant-level Clinical Trial Data.” American Medical Informatics Association Summit, San Francisco CAIda Sim, MD, PhD
November 17, 2017 “Acceleration of Innovation to Overcome Intractable Diseases." Academic Research Organization’s 2nd Global Network Workshop, Austin TXIda Sim, MD, PhD