News & Events

Vivli Annual Meeting demonstrates data sharing progress

This year’s Vivli Annual Meeting was the most well-attended to date—more than 80 people attended in person and more than 150 people attended online to discuss the impact of data sharing via the Vivli platform. Watch the meeting on YouTube.

Over seven sessions, data contributors and researchers offered their perspectives on how clinical data sharing is advancing progress in cancer diagnosis and treatment, the global response to anti-microbial resistance (AMR), and more.

Sarah Greer and Adrian Peryer created a visual representation of the meeting. They produced 9 illustrated boards that highlighted the insights from each panel. During interactive breaks between panels, participants were also invited to share what conversations had captured their interest by marking the boards with red dots.

 

The highlights of the afternoon were two sessions on sharing imaging data. Dan Boisvert (Biogen) discussed how a Vivli partnership with Boehringer Ingelheim, Biogen, Pfizer, and Sanofi is taking on the challenges of anonymizing images, such as MRI and x-ray imaging, and linking that with tabular data, and making those available through the platform.

After that, Tim Kinkead (Preva Group) shared how the Gates Foundation is supporting the development of an AI-enabled low-cost ultrasound device, so that pregnant women in low-resource settings can have improved care for the mother and baby. Sharing ultrasound imaging data has been integral to training the device as part of the development process. This will ensure that nearly anyone can use the device to generate an accurate ultrasound.

Vivli will also be sharing additional footage from a fireside chat with the Vivli AMR Data Challenge panelists and insights from our Vivli Ambassadors. Stay tuned for those updates to learn more about how insights from data sharing are shaping clinical practice and changing global responses to AMR.

Thank you to everyone who joined virtually and in person for the 2025 Vivli Annual Meeting.

2025 Vivli Annual Meeting examines “Data in Action: From Contribution to Impact”

The 2025 Vivli Annual Meeting was held at Loeb House at Harvard University in Cambridge, MA, and virtually on Thursday, October 23.

During this meeting, we:

  • Explored how researchers, data contributors, and funders are transforming clinical trial data into real-world health impact.
  • Heard how platforms like Vivli are enabling responsible data sharing and fostering a cycle of data re-use.
  • Learned about success stories of groundbreaking data challenges and how they are shaping new developments in various fields of medicine.

Watch the meeting

Agenda

Welcome and Introductions Rebecca Li, Vivli

Researcher and Data Contributor Panel – From Contribution to Impact in Oncology

Moderator: Murray Stewart, Vivli

Paula Boyles, Pfizer

Jennifer O’Callaghan, Roche

Ben Rotz, Lilly

Jonas Saal, University Hospital Bonn

Youssef Zeidan, Baptist Health South Florida

Data ChallengeLessons Learned from the Helmsley Type 1 Diabetes Challenge

Moderator: Deniz Dalton, The Leona M. and Harry B. Helmsley Charitable Trust

Robin Gal, Jaeb Center for Health Research

Dana Lewis, OpenAPS

Data ChallengeLessons Learned from AMR Data Challenges

Moderator: Rebecca Li, Vivli

Harry Akligoh, Northeastern University and Duplex Bioscience

Kasim Allel Henriquez, University of Oxford

Katherine Perez, Pfizer

Amanda Skarlupka, Vivli

Researcher and Data Contributor Panel – From Contribution to Impact in Clinical Trial Applicability to Routine Care

Moderator: Ida Sim, University of California, San Francisco, and Vivli

Jessica Lim, GSK

David McAllister, University of Glasgow

Ben Rotz, Lilly

Cris Woolston, Sanofi

DOJ Countries of Concern – Final Ruling and Practical Implementation for Data Sharing

David Peloquin, Ropes & Gray

Julie Wood, Vivli

Unlocking Imaging Data Sharing – A Collaboration on Imaging Anonymization

 

Dan Boisvert, Biogen

 

Gates Foundation Initiative to Improve Maternal and Infant Health by Sharing Ultrasound Image Data Tim Kinkead, Preva Group
A Way Forward

Rebecca Li, Vivli

Mike Stebbins, Science Advisors and Vivli

 

Vivli CEO Rebecca Li to participate in panel discussion about data sharing under new Department of Justice rule

On September 17, Vivli CEO Rebecca Li, PhD, will speak at the PHUSE Data Transparency Autumn Event. This free, virtual event offers an opportunity for attendees to collaborate on ideas related to data transparency and data sharing. Data managers, biostatisticians, and other professionals interested in data sharing are encouraged to attend.

Dr. Li’s presentation, “Navigating Data Sharing Compliance Under the US DOJ Final Rule on Transfers of Sensitive Personal Data to Countries of Concern – Operational Impacts,” will be from 10:30 a.m. to 12:30 p.m. ET and will focus on privacy-preserving techniques, data anonymization, and governance frameworks. The panel presentation will respond to recent technological and geopolitical developments, including a rule recently issued by the U.S. Department of Justice. Register to attend this free, virtual event.

Vivli launches Ambassador Program

Vivli is delighted to share that we have launched the Ambassador Program and selected our inaugural cohort of Ambassadors. The program was created to raise awareness of the importance of data sharing and reuse, as well as to promote the research opportunities available through the Vivli data repository.

Selected Ambassadors were eligible for financial support to attend conferences aligned with their research focus. A total of five travel grants of $2,500 were awarded. In addition to presenting their work, Ambassadors will participate in user interviews and testing twice a year to help guide the continued development of the Vivli platform.

Researchers who had successfully completed a project using data from the Vivli repository were invited to apply. Eligible researchers received a direct email invitation to submit a brief proposal outlining how they would promote research using the Vivli platform.

Read the full announcement here.

Vivli Webinar: Unlock the Power of Data Analysis in Vivli: Practical approaches to understanding the data and delving deeper into the CDISC standard

Are you a researcher who has analyzed data on Vivli? Or has your research team already analyzed data in the Vivli platform but is looking for more efficient approaches?

This 3-hour training will provide researchers with a practical approach to understanding the data, provide an overview of CDISC, and how this data standard can help you understand the data. It is aimed at clinical researchers and biostatisticians interested in analyzing data in the Vivli platform. There will be an opportunity for participants to ask questions.

View the Recording

Topics include:

  • Understand the type of datasets and supporting documents received after approval.
  • Understand CDISC, SDTM and ADaM? How can these standards help make my analysis more efficient?
  • How to conduct reproducible, safe, open and efficient analyses with special considerations for secondary trial analyses within the Vivli environment.

Speakers & Panelists:

  • Jack Shostak, Director of Biostatistical Operations, Duke & CDISC instructor
  • David A McAllister, Professor of Clinical Epidemiology and Medical Informatics and Honorary Consultant in Public Health Medicine, University of Glasgow
  • Nicole Harmon, COO, CDISC
  • Rebecca Li, CEO, Vivli

View the Recording

 

Vivli Webinar: The Power of Sharing Clinical Trial Data: How to Build a Data Sharing Program While Protecting Participant Privacy


Vivli partnered with Real Life Sciences (RLS) to present this webinar on Thursday, February 20 at 10:00 am ET. Presenters explored how RLS and Vivli enable secure data sharing for study sponsors. Participants learned key steps to launching a data-sharing program and discovered why empirical data anonymization techniques are essential for maintaining participant privacy while maximizing research value.



Vivli webinar: Vivli and RDCA-DAP: Data Platform Partnerships to Promote Rare Disease Data Sharing

Julie Wood, Vivli Chief Operating Officer, will join colleagues from Vivli and C-Path for a webinar on Thursday, February 20 at 12:00 pm ET. Julie will present an overview of Vivli’s global data-sharing and analytics platform and how Vivli’s collaboration with RDCA-DAP is advancing data sharing in rare diseases.

In addition to Julie’s presentation, the webinar will also include a panel discussion on platform-to-platform collaborations, strategies for facilitating data sharing, an interactive Q&A session with participants, and more!

View the Recording

 



Vivli Webinar: Navigating Clinical Trial Data Sharing Under the New Declaration of Helsinki: Practical Steps for Instituting an Ethical and Effective Program

In this webinar, we will discuss the new Declaration of Helsinki and how institutions can take practical steps to institute an ethical and effective data sharing program.

Join us on Thursday, January 23 at 8am PST/11am EST/4pm GMT, for a discussion with Vivli’s CEO Rebecca Li and COO Julie Wood about the top five questions companies or non-profit foundations should ask when they are considering embarking on a data sharing program.

View The Recording

Topics include:

  • Why should we share clinical trial data?
  • When should we begin a data sharing program?
  • How do we start to build a data sharing program?
  • How can we manage a data sharing program?
  • What can a partner like Vivli do for us?

Speakers:

  • Rebecca Li, CEO, Vivli
  • Julie Wood, COO, Vivli

View The Recording

Event: 2024 Vivli Annual Meeting – Innovations in Data Sharing

This event was held at Harvard Faculty Club in Cambridge, MA, on Friday, November 15, for the 2024 Vivli Annual Meeting, co-hosted with the MRCT Center of Brigham and Women’s Hospital and Harvard. The meeting focuses on Innovations in Data Sharing and features a keynote address from Steffen Thirstrup, CMO of the EMA. He speaks on the European Health Data Space.

 

RECORDINGS SPEAKER BIOGRAPHIES

Session topics focus on the following areas:

  • Keynote address: Steffen Thirstrup, EMA on European Health Data Space
  • Panel discussion on European Health Data Space
  • Health Information Exchanges
  • Risks and Opportunities in AI and data sharing

Agenda


 

Keynote: Steffen Thirstrup, CMO, European Medicines Agency (EMA)

Looking to the future: The opportunities for data sharing and the European Health Data Space

RECORDING


Panel Discussion: The Opportunities for data sharing and the European Health Data Space (EHDS)

Following on from the keynote address, panelists discuss the potential of the EHDS.

Moderator: Rebecca Li, CEO and Co-founder, Vivli

  • David Leventhal, Data Sharing & Disclosure Lead, Pfizer
  • David McAllister, Professor of Clinical Epidemiology and Medical Informatics, University of Glasgow
  • Steffen Thirstrup, CMO, EMA
  • Aneta Tyszkiewicz, Director, Digital & Data, EFPIA

RECORDING


Panel Discussion: Use of Health Information Exchange (HIE) data for research: legal and ethical challenges

The panel discusses challenges related to the use of HIEs and other U.S. data sharing frameworks for research purposes, including research recruitment, retrospective studies, and more.

Moderator: Barbara Bierer, Faculty Director, MRCT and Vivli co-founder

  • Jill De Graff, VP of Regulatory, b.well Connected Health
  • Irene Koch, Executive Vice President and Chief Legal Officer, Hospital for Special Surgery, New York City
  • David Peloquin, Partner, Ropes & Gray

RECORDING


Panel Discussion: Risks and Opportunities in AI and data sharing

Panelists discuss AI’s risks and opportunities for sharing and re-using data today and in the coming years.

Moderator: Ida Sim, Professor of Medicine and Computational Precision Health, University of California San Francisco; Vivli co-founder

  • Karla Childers, Head, Bioethics-based Science & Technology Policy, Johson & Johnson
  • Dawei Lin, Associate Director for Bioinformatics & Senior Advisor to the Director at DAIT, NIAID, NIH
  • Subha Madhavan, Vice President & Head of AI/ML, Quantitative & Digital Sciences, Research and Development, Pfizer and Vivli Board member
  • David Peloquin, Partner, Ropes & Gray

RECORDING


 

Vivli CEO Rebecca Li to participate in panel discussion for Harnessing the Potential of Patient-Level data in Clinical Trials     

Vivli’s CEO, Rebecca Li, will speak on Day 3 at the Global Clinical Trials: Technology & Innovation webcase series. This online event will take place on May 14-16, 2024. Li will participate as a panelist in a discussion session on ‘Harnessing the Potential of Patient-Level data in Clinical Trials.’

Explore the practical benefits of patient-level datasets in clinical trial as industry experts discuss strategies for implementing fully consented patient data and its impact on trial outcomes. The panel will be held on Thursday, May 16th, 5pm CEST / 4pm BST / 11am EDT. Learn more and register here.