News & Events

Category: News

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

Vivli is hiring a Clinical Trial Transparency Associate

VIVLI, the Center for Global Clinical Research is seeking a Clinical Trial Transparency Associate. Vivli is a mission-focused non-profit and to help manage our continued growth, we are looking for a seasoned Clinical Trial Transparency Associate to join the operations team. The operations team supports researchers seeking to access datasets from contributors and provides support for data contributors.

Location: Remote, working core hours of 9am-5pm Eastern time zone, with the ability to travel 3-4 times per year.

Responsibilities will include but not limited to:

  • Manage day-to-day data request review process for specific requests following strict SOPs.
  • Work closely with Vivli end users to ensure researchers and members meet assigned requirements on specific requests.
  • Help manage approved research projects when in the analysis stage all the way through to project closeout.
  • Manage and help contribute to projects related to Vivli’s mission.
  • Testing new platform features and writing instructions for users on how to use those features, as required.
  • Perform other duties when requested.

 Qualifications

  • Minimum 3 years’ experience managing data transparency processes, either at an existing repository, platform or as a data contributor
  • Understanding of global regulatory requirements for clinical trial disclosure, preferred
  • 1-2 years managing data sharing agreements, including working with academic contracting offices
  • 1-2 years of experience working in an academic medical center or academic research center, preferred
  • Understanding of clinical trials processes and/or clinical data management, preferred
  • Excellent written and oral communication skills and interpersonal skills
  • 2-3 years of prior experience with following agreed SOPs and process improvement
  • Computer proficiency in MS Office, Excel, PowerPoint, Dropbox etc.
  • Excellent organizational skills and high attention to detail and accuracy
  • Ability to manage projects and resources
  • Bachelor’s degree in the health profession or science field.

Must be authorized to work in the United States.

What We Offer

  • Comprehensive benefits package, including health, dental, and vision insurance.
  • Opportunities for professional growth and development
  • Flexible work arrangements
  • A dynamic and collaborative workplace culture
  • Meaningful work that makes a real difference in the world

How to Apply

Interested candidates should submit their resume and a cover letter to hr@vivli.org

Vivli is hiring a UX Lead Engineer

VIVLI, the Center for Global Clinical Research, is seeking a UX Lead Engineer. Vivli is a mission-focused non-profit and to help manage our continued growth, we are looking for a UX Lead Engineer to join the development team to help us continue to improve and grow.

Location: Remote, working core hours of 9am-5pm Eastern time zone, with the ability to travel 3-4 times per year.

Job Description: 

We are seeking a dynamic UX Lead Engineer with Software Engineering Expertise to shape the future of our user experience. This hybrid role requires a visionary approach to user-centered design combined with a solid technical foundation in software engineering. You will lead a cross-functional team to deliver engaging, scalable, and accessible digital products that align with our business goals and technical capabilities.

Key Responsibilities:

Leadership & Strategy

  • Define and lead the UX vision and strategy to enhance product usability and user satisfaction.
  • Drive collaboration between design, engineering, and product teams to ensure a cohesive user experience.
  • Advocate for user-centered design across the organization and champion the voice of the user.

Design Execution

  • Oversee the end-to-end design process, including user research, wireframing, prototyping, and usability testing.
  • Ensure design consistency and quality across all platforms through the creation and maintenance of design systems.
  • Partner with stakeholders to translate business requirements into intuitive, functional, and visually appealing interfaces.

Technical Integration

  • Collaborate with software engineering teams to bridge the gap between design and development, ensuring feasibility and fidelity.
  • Write and review code where necessary, leveraging knowledge in front-end frameworks (e.g., React, Angular, or Vue.js) and tools.
  • Drive innovative solutions through the integration of design principles with modern engineering practices.

User Research & Analytics

  • Lead qualitative and quantitative user research to inform design decisions and identify user pain points.
  • Leverage analytics tools to monitor user behavior and improve key performance indicators (KPIs).
  • Conduct usability testing to validate designs and iterate based on feedback.

Team Development

  • Establish best practices for collaboration between design and engineering teams
  • Promote diversity, equity, and inclusion within the design process and team culture.

 Qualifications

Required:

  • Bachelor’s or Master’s degree in UX Design, Human-Computer Interaction, Computer Science, or a related field.
  • 3+ years of experience in UX design.
  • 3+ years of Software Engineering experience.
  • Strong technical foundation in front-end development (e.g., HTML, CSS, JavaScript) and frameworks like React or Angular.
  • Demonstrated success in leading complex design projects from concept to delivery.
  • Knowledge of accessibility standards (e.g., WCAG) and their implementation.
  • Excellent communication and collaboration skills, with the ability to articulate design decisions to technical and non-technical stakeholders.
  • Authorized to work as an employee in the US, with the ability to work core hours in the US Eastern time zone (no C2C or sponsorship).

Preferred:

  • Experience designing and developing for scalable enterprise applications.
  • Experience with design tools such as Figma, Sketch, or Adobe Creative Suite.
  • Familiarity with Agile and Lean UX methodologies.
  • Knowledge of back-end technologies and APIs to enhance collaboration with full-stack teams.
  • Portfolio showcasing a blend of design leadership and technical problem-solving

What We Offer

  • Comprehensive benefits package, including health, dental, and vision insurance.
  • Opportunities for professional growth and development
  • Flexible work arrangements
  • A dynamic and collaborative workplace culture
  • Meaningful work that makes a real difference in the world

How to Apply

Interested candidates should submit their resume and a cover letter to hr@vivli.org

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 Member Spotlight: Duke University Medical School

Duke University is a global leader in developing and sharing innovative clinical research that improves patient care and outcomes. Duke University School of Medicine has been partnering with Vivli since 2018 to foster the principles of open science and data access from clinical studies. In a newly published case study, researchers discuss the value of Vivli’s generalist data repository to share, manage, and re-use valuable clinical data: 

Interested in finding out more about how you or your institution can use Vivli’s generalist repository to share, manage, and re-use data more efficiently? Get answers to your questions on our FAQ page or contact Vivli User Support directly at support@vivli.org.

Brown University joins Vivli to make it easier for its researchers to share their clinical research

“We are delighted to have Brown University join as a member of Vivli, and to play a part in institutional investments in the research enterprise,” said Rebecca Li, Vivli CEO. “We look forward to supporting Brown researchers and staff to meet their commitments to funders to share their data.”

For more information about the conditions for accessing Brown data, please visit their member page. For additional information about Membership in Vivli, learn more here.

Rebecca Li, Vivli CEO, to speak at The Schaefer School of Engineering and Science at Stevens

Vivli is pleased to announce that CEO Rebecca Li has been invited to speak at The Schaefer School of Engineering and Science (SES) at Stevens on Wednesday, October 16, 2024. She has been invited by Center for Global Clinical Research Data to speak as part of the Dean’s Distinguished Lecture Series, on the topic of “Driving Scientific Innovation Through Data Sharing.”

Li’s talk will examine the critical role of data sharing in fostering scientific progress and making well-informed decisions in clinical practice. She will draw on her 25 years of experience in the drug development process spanning the Biotech, Pharma, and NIH environments, as well as her work in founding and building the Vivli data repository over the past five years. 

This in-person event will be open to all SES faculty, staff, students, alumni, and invited guests; information on attending is available here. 



Astellas joins Vivli as a Member to Share its Data

“We are delighted to have Astellas join as a member of Vivli, given its long-standing commitment to data sharing,” said Rebecca Li, Vivli CEO. “We look forward to working with the team at Astellas to share their data to meet their data sharing commitments.”

For more information about the conditions for accessing Astellas data, please visit their member page. For additional information about Membership in Vivli, learn more here.