News & Events

Vivli Platform Launch Event

Clinical trials drive innovation and advance human health. Yet, many in the research community have long believed that we can do even more with the valuable information gathered in those trials. With the launch of the Vivli platform, the global research community will gain a powerful new way to discover, share, and analyze clinical trial data.

Vivli evolved from a project of The Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard (MRCT Center) to enhance access to clinical research data by promoting data sharing and transparency. In 2013, the MRCT Center and a diverse group of global stakeholders embarked on a mission to define, design, and launch a solution to global clinical research data sharing. The launch of the Vivli platform in July will be the final step in turning this MRCT project into a reality. 

The Vivli platform launch event will be held at the National Academies in Washington, D.C. on July 19th. The is free but registration is mandatory, so please register online here as soon as possible as space is limited. 

For those who are unable to attend, Vivli will be webcasting the first hour of the proceedings. Join us from 9am ET on Thursday, July 19th as we unveil our new global data-sharing and analytics platform. Please RSVP to join the webcast.

In addition to recognizing the diverse group of stakeholders and partners whose contributions have helped make the Vivli platform a reality, the launch will serve as a forum for discussion about the future of data sharing in the clinical trials research community.  We hope that you will be able to join us for the official launch of the Vivli platform.

 

Date: July 19, 2018, 8.30am-2pm

Location: National Academies, 2101 Constitution Avenue, NW Washington, DC 20418

 

Agenda

8:30-9:00 Breakfast/Registration 

9:00-9:10 Opening Address by Victor Dzau (President, National Academy of Medicine)

9:10-10:05 Unveiling the Vivli Platform and Platform Demo 

Moderator: Michael Stebbins

  • Rebecca Li, Vivli
  • Paul Slater, Microsoft
  • Ida Sim, UCSF/Vivli

Followed by group discussion and Q & A

10:05-10:20 Break 

10:20-11:00 Panel One: Moving the Needle: How to Shift the Culture on Data Sharing 

Moderator: Barbara Bierer 

  • Sean Coady, NIH, NHLBI 
  • Daniel Ford, Johns Hopkins School of Medicine 
  • Pamela Miller, NEJM 
  • Jane Perlmutter, Gemini Group
  • Catrin Tudur Smith, University of Liverpool 

Followed by group discussion and Q & A

11:00-11:40 Panel Two: The Future Direction on Data Sharing: Industry Perspectives

Moderator: Rebecca Li 

  • Karla Childers, J&J
  • Edith Eby, Pfizer
  • Andy Powrie-Smith, EFPIA
  • Jessica Scott, GSK 
  • Murray Stewart, Novelion Therapeutics 

Followed by group discussion and Q & A

11:40-11:55 Lightning Rounds 

Moderator: Frank Rockhold, Duke University

  • Lorne Becker, Cochrane
  • David Bobbitt, CDISC
  • Sander Timmer, Microsoft (Invited) 

11:55-12:10 Recognition of Vivli Founders

12:10-1:00 Lunch 

1:00-1:40 Panel Three: The Levers of Change: Views on Incentivizing Data Sharing 

Moderator: Mark Barnes 

  • Gina Agiostratidou, Helmsley Charitable Trust  
  • Stuart Buck, Laura and John Arnold Foundation 
  • Jennifer O’Callaghan, Wellcome Trust 
  • Betsy Myers, Doris Duke Foundation 
  • Steven Kern, Bill and Melinda Gates Foundation
  • Kristin Schneeman, FasterCures 

Followed by group discussion and Q & A

1:40-2:00 Concluding Remarks by Julie Wood and Rebecca Li 

Lodging Information

A list of preferred hotels near the National Academies can be found here. As this will be during the height of the tourist season, we advise booking early to avoid disappointment.

Transportation Information

The National Academy of Sciences Building, located at 2101 Constitution Ave., NW, in the Foggy Bottom area of Washington, D.C., is served by Ronald Reagan National Airport (DCA), Dulles International Airport (IAD) and Baltimore/Washington International Airport (BWI). It is accessible by Metro’s Orange and Blue lines.

There is a limited number of parking spaces that will be allocated on a first, first served basis. Parking can also be found at the following:

  • PMI (Columbia Plaza) – 2400 Virginia Avenue. Operating daily rate is $24.00
  • PMI – 1111 19th Street. Operating daily rate is $24.00
  • GW Elliot School Garage near Department of Interior – 1957 E Street, N.W. Operating daily rate is $26.00.

 

 

Privacy Analytics to offer data anonymization to Vivli members

CAMBRIDGE, MA-The Vivli platform is a new, groundbreaking digital platform where researchers can request and analyze clinical trial data sets in a secure research environment. Today Vivli announced a collaboration with Privacy Analytics, an industry leader sharing health data, data security and de-identification, to offer anonymization services to individuals and organizations who wish to share clinical data on the Vivli platform.  

“This collaboration will enable Vivli to meet the needs of a broad base of data contributors, by lowering one of the significant barriers to sharing sensitive health care data,” said Vivli Executive Director Rebecca Li. “Vivli allows sharing of clinical data sets regardless of the sponsor or therapeutic area, and by working with Privacy Analytics, we will open the Vivli platform to many data contributors previously unable to share their data as they were unable to anonymize their data.”  

For more than a decade Privacy Analytics has been an industry leader in the anonymization of healthcare data, for both research and data security purposes. Privacy Analytics “uses a risk-based approach to de-identification to maximize the value of real world data while following globally accepted standards and guidelines and complying with regulations in many jurisdictions worldwide.” This approach helps researchers to “effectively harness the value of health data for secondary use,” while simultaneously ensuring the safety of protected information.  

 “Privacy Analytics is eager to offer their services to Vivli Members,” said Khaled El Emam, CEO of Privacy Analytics. “Privacy Analytics’ anonymization services are a proven, responsible way to unlock the value of health data like the clinical data sets shared on the Vivli platform. By working with Vivli Members and other data contributors, we can help them to meet their data sharing requirements responsibly and cost effectively while also driving scientific breakthroughs.” 

 By collaborating with Privacy Analytics, Vivli is driving forward the use of emerging technologies to promote and enable clinical data sharing, with the goal of developing new discoveries to improve human health.   

About Vivli: 

Vivli is a non-profit organization that is establishing a global data-sharing and analytics platform to serve all elements of the international research community. We act as a neutral broker between data contributor and data user and the wider data sharing community. Vivli is establishing an independent data repository, in-depth search engine and a cloud-based analytics platform. We are working to provide the platform as well as harmonize the governance, policy and processes to make sharing data easier. The ultimate aim of Vivli is to advance human health from the insights and discoveries gained by sharing and analyzing clinical research .

 About Privacy Analytics:  

Privacy Analytics, an IQVIA company, allows healthcare organizations to quickly and easily apply a responsible risk-based de-identification methodology that protects individual privacy and ensures legal compliance. The company’s methodology and software have been deployed globally for different types of health data, including prescription, claim, EMR, hospital, registry, and clinical trials for both commercial and academic data sharing efforts. 

Wellcome Trust will collaborate with Vivli to oversee the platform’s independent review panel

Vivli offers a new, groundbreaking digital platform where researchers can request and analyze clinical trial data sets in a secure research environment. Wellcome Trust has agreed to collaborate with Vivli and act as the secretariat for the data sharing platform’s Independent Review Panel (IRP). Vivli will launch on July 19th, in an event at the National Academy of Sciences in Washington, D.C. Jennifer O’Callaghan, Clinical Data Sharing Manager at Wellcome Trust, will be speaking on a panel about this partnership at the event.

“Wellcome is pleased to be working with Vivli in their global effort to enable clinical trial data sharing,“ said O’Callaghan. “At Wellcome we share Vivli’s belief that clinical data sharing is a critical tool in modern medical and bioscience research. By enabling managed access to clinical trial data, Vivli and Wellcome will work together to help researchers make new discoveries that can positively impact human health.”

Wellcome is a longstanding, widely trusted global leader in health research and has years of experience in the role of IRP secretariat. As the IRP secretariat for the Vivli platform, Wellcome will bring valuable expertise, experience and vision to the newest horizon in global clinical data sharing efforts. They will play this role for data contributors who request this service to facilitate data requests made by researcher for their anonymized individual patient data.

“The Vivli team looks forward to working very closely with Wellcome Trust, in furtherance of our shared values and commitments regarding data sharing,” said Rebecca Li, Vivli’s Executive Director. “We feel that Wellcome Trust brings not only experience but a proven record of enabling critical research while also protecting the safety and privacy of research participants.”

With this partnership, Vivli offers those data contributors who wish to have an independent, neutral party oversee the review of requests access to an esteemed independent scientific panel who will review research proposals based on their scientific merit.

About Vivli:

Vivli is a non-profit organization that is establishing a global data-sharing and analytics platform to serve all elements of the international research community. We act as a neutral broker between data contributor and data user and the wider data sharing community. Vivli is establishing an independent data repository, in-depth search engine and a cloud-based analytics platform. We are working to provide the platform as well as harmonize the governance, policy and processes to make sharing data easier. The ultimate aim of Vivli is to advance human health from the insights and discoveries gained by sharing and analyzing clinical research data.

 About Wellcome Trust:

Wellcome exists to improve health for everyone by helping great ideas to thrive. We’re a global charitable foundation, both politically and financially independent. We support scientists and researchers, take on big problems, fuel imaginations, and spark debate.

 

Li presents at Microsoft Event in the UK

Vivli Executive Director Rebecca Li gave a presentation about the Vivli platform at the Microsoft Life Sciences event, “Intelligent Medicines – Future Decoded,” in Cambridge, U.K. Dr. Li joined a distinguished roster of speakers on subjects at the intersection of health and technology, giving the audience an opportunity to learn about the Vivli platform and organization. The Vivli  platform, which will launch July 19th, harnesses the power and security of the Microsoft Azure cloud to enable clinical data sharing 

Keyword Search added to the beta version of the Vivli platform

Today we have added a Keyword Search to complement the PICO search to enable listing studies directly into Vivli for more basic searching. This change was made based upon feedback from our users. There are now 3 ways to search for studies on the platform—using the Keyword Search, PICO search, or quick search for looking up a single study. The Keyword Search will retrieve all studies that include the exact words you type into the search box whereas the PICO search allows you to refine your search using the vocabulary trees.

Vivli will continue to refine and update the beta website based upon user feedback so please do try out the beta version of the Vivli platform.

Ida Sim Showcases Vivli Platform at the 2018 AMIA Informatics Summit

On March 13, Vivli’s Dr. Ida Sim participated in a panel of oral presentations around clinical and research data integration at the American Medical Informatics Association summit in San Francisco. Her presentation was entitled, “Vivli: A Global Secure Data Sharing Platform for Participant-level Clinical Trial Data.” Dr. Sim discussed how Vivli, as an impartial platform, will guide and create standards for individual participant-level data sharing, offering solutions to some of the problems that have long beset clinical researchers. Utilizing natural language processing technology, Vivli will identify information about participant Population, Intervention, Comparator and Outcome (PICO) elements and transform that information into fully searchable, computable fields.

A lively discussion about existing models of information sharing and future directions for the management of participant-level clinical trial data followed the presentation. If you attended the AMIA Informatics Summit and would like to learn more about Vivli, please get in touch with members of our team at contact@vivli.org to arrange a platform demo for your institution or company.

Vivli to Unveil Platform in Official Launch Event in July

Clinical trials drive innovation and advance human health. With the launch of the Vivli platform, the global research community will gain a powerful new way to discover, share, and analyze clinical trial data. The platform launch event will be held at the National Academies in Washington, D.C. on July 19th. Attendance at the event is by invitation only as space is limited, so please get in touch with Vivli at contact@vivli.org if you would like to attend.

In addition to recognizing the diverse group of stakeholders and partners whose contributions have helped make the Vivli platform a reality, the launch will serve as a forum for discussion about the future of data sharing in the clinical trials research community. Details about the agenda will be made available nearer to event. We hope to see you there!

Vivli Offers Model of Sustainable Data Sharing

The sharing of clinical trial data offers researchers opportunities for validating key findings and avoiding the cost of duplicative studies, while unleashing innovations that can culminate in life-saving care. Advances in technical infrastructure mean that biomedical researchers now have more data at their fingertips than ever before, but challenges remain. In their post on Health Affairs Blog, Kim McCleary and Kristin Schneeman name the challenge of ensuring that data sharing platforms are financially and economically sustainable one of the medical research and development issues to watch in 2018.

Whether drawing on established financial models or pioneering innovative new structures, data sharing platforms must be ready to face the challenge of sustainability if they seek to maximize their full potential. Vivli is committed to providing a global platform for data sharing grounded in financial sustainability so that researchers can reap the benefits of our innovative approach for years to come. To learn more about our mission and our commitment to financial sustainability, see our overview.

Rebecca Li to Be a Keynote Speaker at the 2018 Biomedical Transparency Summit

On January 26, Rebecca Li will be a keynote speaker at the 2018 Biomedical Transparency Summit sponsored by the Center for Biomedical Research Transparency at the Hyatt Regency in Bethesda, MD. Alongside other transparency leaders, Dr. Li will address how Vivli will enhance open access and transparency for biomedical researchers, as timely communication of clinical trial findings can provide guidance for future research design, minimize waste among the funders of biomedical research, and spare study participants from a significant degree of avoidable risk.