Webinars, Publications & Presentations about Data Sharing

VIVLI WEBINARS

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

Date	Webinar	Speakers
January 2025	Navigating Clinical Trial Data Sharing Under the New Declaration of Helsinki: Practical Steps for Instituting an Ethical and Effective Program	Rebecca Li, Vivli Julie Wood, Vivli
April 2024	The Potential Impact of Recent U.S. Legal Developments on Data Sharing with China and Other Countries of Concern	Rebecca Li, Vivli David Peloquin, Ropes & Gray
April 2023	Recent Developments in Data Privacy Laws and their Impact on Data Sharing	Rebecca Li, Vivli David Peloquin, Ropes & Gray Katherine Wang, Ropes & Gray
February 2023	Submitting Your NIH Data Management and Sharing Plan using Vivli	Anne Seymour, Johns Hopkins University Amy Nurnberger, Massachusetts Institute of Technology John Borghi, Stanford University Rebecca Li and Julie Wood, Vivli
November 2022	Applying the SAFE Data Standard to Securely Share Clinical Trial Data	Luk 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 2022	Mind the Data Sharing Gap: Navigating sponsor policies and data protection methodologies	Luk 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 2022	How Vivli Promotes Discoverability of Partner Platforms and Repositories	Ishwar Chandramouliswaran, NIH Dawei Lin, ImmPORT Ida Sim, UCSF and Vivli
June 2021	Sharing Academic Clinical Research Data	Ida 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 2021	Clinical Trial Data Sharing and Machine Learning Research	Ida Sim, UCSF and Vivli Abigail Gregor, Ropes & Gray Daniel Freshman, Ropes & Gray
September 2020	Synthetic Data: How to preserve privacy of participants when sharing clinical data	Patrick Cullinan, Bluebird Bio Khaled El Emam, Replica Analytics Michael Lesh, Syntegra
July 2020	Accelerating Science in the Age of COVID-19: Three Key Data Initiatives	Rebecca 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 2020	Future Directions: Real World Data, Real World Evidence and Clinical Trials	Dr. Ida Sim Marcia Levenstein Dr. Gregory Pappas Dr. Jack Mardekian
November 2019	Credit for Data Sharing	Dr. Barbara Bierer, Ms. Heather Pierce
October 2019	Why Data Sharing and Data Standardization Matters	Mr. David Bobbitt MSc, MBA Dr. Ida Sim, MD, PhD Dr. Rebecca Li
May 2019	Top five questions small and mid-size companies should ask before embarking on a data sharing program	Dr. Rebecca Li
March 2019	Keys to Submitting a Quality Research Proposal to a Data Sharing Platform	Ms. 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 2019	How to Share and Request Data on Vivli	Dr. 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 Summaries	Julie Wood Rebecca Li, PhD
May 5, 2021	"Data Sharing in a Time of Pandemic", a webinar with Front Line Genomics	Rebecca 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 Network	Rebecca Li, PhD
March 26, 2021	"Acceleration of Research and Implications for Research Transparency." Center for Biomedical Research Transparency Summit Series	Ida Sim, MD, PhD
January 19, 2021	"Data Sharing of Rare Disease Data – Challenges and Rewards." PHUSE Data Transparency Winter Meeting	Rebecca Li, PhD
December 11, 2020	"Vivli: A Global Clinical Trials Data Sharing Platform." dkNET webinar	Ida 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 Conference	Rebecca Li, PhD
August 18, 2020	"Platform Analytics Tools to Support Rare Disease Drug Development." FDA convening hosted by the Duke-Margolis Center for Health Policy	Rebecca 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 Workshop	Rebecca Li, PhD
October 10, 2019	"Clinical Trial Data Sharing and Reuse: A New Reality for Researchers." Clinical Data Interchange Standards Consortium Webinar	Ida 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 Rounds	Rebecca 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 World	Rebecca 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 Kong	Rebecca Li, PhD
March 27, 2019	“Vivli: A Global Secure Data-Sharing Platform for Participant-Level Clinical Trial Data." Medical Informatics Association Summit, San Francisco CA	Ida Sim, MD, PhD
January 30, 2019	“The Disclosure and Data Sharing Lifecycle.” CBI Clinical Data Disclosure and Transparency Conference, Philadelphia PA	Julie Wood Thomas Wicks (TrialScope)
October 25, 2018	"Sharing and Using Deidentified Individual Participant Data (IPD)." DIA Global Clinical Trials Transparency Conference, London	Rebecca 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 CA	Ida Sim, MD, PhD
November 17, 2017	“Acceleration of Innovation to Overcome Intractable Diseases." Academic Research Organization’s 2nd Global Network Workshop, Austin TX	Ida Sim, MD, PhD