We are delighted to share with you Vivli’s 2019 Progress Report, 
which highlights our milestones to date and plans for the year ahead.
We look forward to continuing to grow together in 2020 and beyond, as leaders in data sharing and transparency, working together towards our end goal of advancing human health.
Challenges and a Way Forward in Sharing Clinical Trial Data: A Workshop on November 18-19, 2019
Vivli Executive Director, Rebecca Li, will speak about the Vivli platform on the first day and Vivli founder and technical lead, Ida Sim, will moderate a session on the second day about Overcoming Usability and Sustainability Challenges.
The workshop will explore challenges, and opportunities in clinical trial data sharing efforts since the release of the 2015 Institute of Medicine report Sharing Clinical Trial Data: Maximizing Benefits, Minimizing Risk.
WORKSHOP SPEAKERS WILL:
This workshop is co-sponsored by the Wellcome Trust and convened under the auspices of the National Academies Forum on Drug Discovery, Development, and Translation; the Forum on Neuroscience and Nervous System Disorders; the National Cancer Policy Forum; and the Roundtable on Genomics and Precision Health.
Vivli, the Multi-Regional Clinical Trials Center (MRCT Center) and Association of American Medical Colleges (AAMC) present a discussion on methodologies for appropriating credit in data sharing. Dr. Barbara Bierer, MRCT Center Faculty Director, and Heather Pierce, Senior Director of Science Policy for AAMC share how purpose-driven data sharing both enhances scientific discovery and ensures data generators receive credit for their work. The webinar will be held Tuesday, November 12th at 11am EST.
Vivli Executive Director Rebecca will present at the Drug Information Association’s (DIA) Future of Evidence Workshop session on Real World Evidence (RWE), Data Sharing and Data Transparency. Dr. Li’s presentation on “Finding New Solutions to Problems and Concerns in Clinical Data Sharing – Outcomes from Datathon” will speak on October 25. The Switzerland based event runs October 24 – October 25, 2019 from 9:00am – 5:30pm. The workshop agenda includes three separate sessions on the important components in maximizing clinical utility, and the role of willingness to share data in this initiative.
“We are delighted to have Johnson & Johnson join Vivli as a member,” said Rebecca Li, Vivli Executive Director. “This partnership will drive science forward by enabling the combination of J&J data with sources available from Vivli’s other member organizations.”
Read more about the partnership in this post by Joanne Waldstreicher, Chief Medical Officer at Johnson & Johnson.
The Vivli Annual Meeting event on Wednesday, September 18, 2019 was recorded.
For those who are unable to attend the meeting in person, you can view the proceedings.
Annual Meeting Agenda
Welcome remarks
Vivli Update for 2019 and Vision for 2020
Working lunch
Invited Speaker: Informed consent and secondary use of data for data sharing – David Peloquin, Ropes & Gray
Panel Discussion: Challenges of sharing small datasets and rare disease data
Lightning Rounds–Brief updates from Vivli stakeholders
Wrap-up and Next steps
Dr. Rebecca Li will discuss how Vivli used synthetic datasets as part of its data challenge with Microsoft on a webinar entitled An Introduction to Synthetic Clinical Trial Data. The webinar will be on October 4 at 11am-12pm EDT and is hosted by Replica Analytics. Sign up to the webinar today to find more about how synthetic data can be used to share clinical trial date while protecting participant privacy.
More than 60 participants forming 11 teams, took part in the first Vivli Microsoft Data Challenge today at District Hall in Boston. Participants were from universities including Harvard, Northeastern, Brown, and Boston as well as nearby hospitals, pharmaceutical, biotech and software companies.
The data challenge focused on finding innovative solutions for how to safeguard participant privacy and minimize privacy loss while maintaining the scientific analytic value of the data for rare disease data sets that are more highly identifiable.
The day started off with a presentation by patient advocate Jane Perlmutter sharing with the attendees the importance of this challenge.
“I’m a long-term cancer survivor… patients don’t have the luxury of patience, she said. “When they enter a clinical trial, they’re hoping they would profit form it, hoping future generations won’t have to suffer from it as well.”
The teams had one hour to plan and then four hours to come up with their solutions. They were then given five minutes to present their ideas to the judges.
“The Datathon has met our expectations, there’s a really diverse group of people that are rallying around solving a problem,” Paul Slater, co-founder of the Clinical Research Innovation Hub at Microsoft. “They’re discovering, there’s a bunch of innovative approaches to this, we don’t know if we’re getting an end solution but we may certainly get ourselves closer to it. This might be an opportunity to blend some of the best ideas together to make some meaningful products. The thing we’re going after is high impact.”
The winners are:
Global Grand Prize Winner:
Team: DBMI
Participants: Gaurav Luthria and Qingbo Wang, Harvard University
Most Innovative Solution:
Team: DataHack
Participants: Cynthia Frommit (IND), Het Patel (Beth Israel), Vikas Gaikwad (Plural Point), Luther Evans (MGH Martinos Center), Annadoir Stavely (Otsuka USA) and Vikramen Karunanidhi (Ayu Devices)
Most Outstanding Graduate Submission:
Team: SAIL
Participants: Megan Fantes, Kinan Dak Albab, Wyatt Howe, Yi Zhang, Peter Flockhart, Lucy Qin from Boston University
Outstanding Remote Submission:
Team: Next Tech Lab
Participants: Sourva Sharan, Arjun Bahuguna from Next Tech Lab
Find out more about the Datathon and see the full list of Datathon submissions.
Join us to find solutions to problems in data privacy and rare disease clinical data sharing and network with tech and medical leaders in the field
Datathon in Boston; free attendance; monetary prizes
WHAT: Microsoft and Vivli, a clinical trial data sharing platform, are joining forces for a one-day datathon in Boston on data privacy and rare disease clinical trial sharing. Rare disease clinical trials often have just a few participants and protecting their privacy and their data is paramount. But many individuals with rare diseases and their families are eager to have their data shared in order to make progress on their disease and save lives. How do we solve this?
The problem statement: How can teams safeguard participant privacy and minimize privacy loss while maintaining the scientific analytic value of the data, for smaller data sets or rare disease data set that are more highly identifiable?
WHEN: June 21, Boston’s District Hall, from 10:30 am to 7 pm. Meals provided!
WHY: This is a great opportunity to network with leaders in this field from Microsoft representatives to leading scientists in the field. Prior experience is not a requirement, attendance is free, and monetary prizes for the top winning solutions chosen by judges.
PRIZES
The Global Microsoft-Vivli Datathon prize will go to members from the winning team with the highest score. They will receive $1,500 and an invitation and travel expenses paid (up to $1,500 for two team members) to Vivli’s Annual Meeting in Washington, DC. The team will be invited to present their solution to stakeholders in the data sharing community (non-profit foundations, pharmaceutical industry and leading academic institutions). Additional prizes:
$500: Most Innovative Solution
$200: Most Outstanding Graduate Submission—submission from a team comprised of a majority of graduate students
$200: Most Outstanding Undergraduate Submission — submission from a team comprised of a majority of undergraduate students
Outstanding Remote submission — A select group of remote, international participants will be admitted, but are not eligible for the other prizes
Read the FAQs for more information about the event, including ideas that could be included in your team’s submission to the innovation challenge.
WHO: Individuals or teams from all backgrounds, skills, genders, and geographies are welcome. We accept a wide range of applicants, from beginners, to experienced veterans of innovation challenges. Invited are all experts and leaders in data analytics, data science, technology, clinical research, patient advocacy, data privacy and statistics.
Questions? support@vivli.org
Informed Consent and Data Sharing – a community discussion from
Vivli is pleased to provide a recording of our latest presentation, a discussion with leading experts in informed consent and data sharing. This conversation, recorded live February 13, 2019, featured Vivli Executive Director Rebecca Li, Dr. Barbara Bierer, Faculty Director of the MRCT Center, David Peloquin, Associate at Ropes & Gray, and Dr. Stephen Rosenfeld, SACHRP Committee Chair, discussing informed consent and data sharing.
Topics include:
Presenter bios:
Dr. Barbara Bierer
Dr. Rebecca Li
Mr. David Peloquin
Dr. Stephen Rosenfeld
IRB/REB Chair, Quorum; Chair, SACHRP