Few things are more frustrating than wasted time. The Vivli team wants to help you make the most of your valuable time, and to help make sure that your data request has the best possible chance for success. While access to data is a decision made by our data contributors (see our Members Page for more details), we do have some general tips and tricks for drafting your data request.
1. Use our resources. Vivli has several resources to help data requestors, including a Quick Start for Requesting Studies and a Data Request Form Worksheet that you can fill out offline, and share with other members of your research team. Both resources are full of specific information about the fields of the data request form that may require greater attention.
2. Ask for help. Vivli has dedicated staff ready and waiting to answer any questions you may have about the Vivli platform. You can contact our team via email to support@Vivli.org.
3. Watch a webinar. Review our webinar on Keys to Submitting a Quality Research Proposal to a Data Sharing Platform, with representatives from our platform as well as the YODA Project; the Wellcome Trust IRP; and AbbVie. Vivli co-founder Dr. Ida Sim has also created a webinar to explain how to share and request data on Vivli; and Dr. Sarah Nevitt of the University of Liverpool provided Vivli users with an in-depth presentation on how to perform IPD meta-analysis. Check our library for additional webinar content.
4. Tell us about you & your team. When filling out the Lead Researcher and Statistician Researcher fields on the Data Request Form, make sure you list the specific training, qualifications, education or experience that qualifies you and your team to do the analysis described in your proposal.
5. Watch for abbreviations. We frequently see data requests full of abbreviations and acronyms. These time-savers can be helpful, but make sure you spell out the entire phrase the first time it appears in your data request so that it can be more easily understood when it is published on our website.
6. Be specific. Data contributors generally want to know how your project relates to the data you’ve requested. Make sure you tie the studies you’re requesting to a specific scientific question or hypothesis.
7. Check your dates. On the data request form, you must enter an anticipated start and completion date for your project. This refers to the timeline of your work on the Vivli platform only, so make sure the dates you enter reflect that.
8. Give it a title. After your data request is approved and you get access to the data, certain parts of your data request will be published on the Vivli website. This includes the title, so make sure you give your project a title that briefly describes your project.
9. Check it twice. While your data request will not be evaluated for its spelling or grammar, it is important to be sure that anyone who may be reviewing it can clearly understand the information. You can use our downloadable Data Request Form to draft your proposal and then copy the information into the platform when filling out the data request.
10. Revisions requested? Don’t sweat it. Even if you follow all the tips above, your data request may still be sent back for revisions. These may come from the Vivli team, or from Data Contributors or other reviewers asking for more information or clarifications. Revising your request is an easy, straightforward process and the Vivli team is available to help every step of the way.
Category: News
Credit for Data Sharing Webinar
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.
Topics include:
• Methods for leveraging existing initiatives to track, use, and reuse impactful scientific data
• Benefits of purpose-driven data sharing to both public and scientific community
• Recommended policy and practice changes
• Role of journals, funders, and academic institutions
• Methods for leveraging existing initiatives to track, use, and reuse impactful scientific data
• Benefits of purpose-driven data sharing to both public and scientific community
• Recommended policy and practice changes
• Role of journals, funders, and academic institutions
Presenters
Barbara E. Bierer, MD
Faculty Director, the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard (MRCT Center)
Barbara E. Bierer, MD
Faculty Director, the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard (MRCT Center)
Co-Founder and Board Member, Vivli
Heather Pierce, JD, MPH
Senior Director – Science Policy, Regulatory Counsel, Scientific Affairs. Association of American Medical Colleges
Vivli Executive Director and Special Advisor presenting at NIH Grand Rounds
Vivli Executive Director Rebecca Li and Frank Rockhold, Vivli Special Advisor and Professor of Bioinformatics at Duke Clinical Research Institution, will present at the NIH Grand Rounds on September 27 from 1-2pm EST on Preparing for Clinical Trial Data Sharing and Re-use: The New Reality for Researchers.
Li discusses datathon outcomes at RWE workshop
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.
Johnson & Johnson joins Vivli as a member
“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.
Watch the recording of Vivli’s Annual Meeting
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
- Patrick Cullinan, Takeda
- Edith Eby, Pfizer
- Robyn Himick, Amyloidosis Research Consortium
- David Peloquin, Ropes & Gray
- Susan Ward, cTAP
Lightning Rounds–Brief updates from Vivli stakeholders
- Tianjing Li, Johns Hopkins University – Meta-analysis Utilizing IPD
- Quan Chen, ImmPort, NIH – Data reuse partner
- Gaurav Luthria and Qingbo Wang, Harvard University – Vivli Microsoft 2019 Datathon Grand Prize Winners
- Heather Pierce and Anurupa Dev, Association of American Medical Colleges – Credit for data sharing
- Pam Miller, New England Journal of Medicine – NEJM Experience with Data-Sharing Statements
Wrap-up and Next steps
Vivli Executive Director to Share Experience with Synthetic Data
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.
Register for Vivli’s Annual Meeting on September 18
“Working Together to Transform Data Sharing”
The Vivli Annual Meeting event will be held at the DoubleTree by Hilton Hotel Bethesda.
The event is free but registration is mandatory, please register as soon as possible as space is limited.
Date: Wednesday, September 18, 2019.
11:30 – 4:00 pm EST.
Location: DoubleTree Hilton – 8120 Wisconsin Avenue. Bethesda, MD 20814
If you are unable to attend in person, a livestream of the meeting is available. Sign up to attend the meeting virtually.
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
- Patrick Cullinan, Takeda
- Edith Eby, Pfizer
- Robyn Himick, Amyloidosis Research Consortium
- David Peloquin, Ropes & Gray
- Susan Ward, cTAP
Lightning Rounds–Brief updates from Vivli stakeholders
- Tianjing Li, Johns Hopkins University – Meta-analysis Utilizing IPD
- Quan Chen, ImmPort, NIH – Data reuse partner
- Gaurav Luthria and Qingbo Wang, Harvard University – Vivli Microsoft 2019 Datathon Grand Prize Winners
- Heather Pierce and Anurupa Dev, Association of American Medical Colleges – Credit for data sharing
- Pam Miller, New England Journal of Medicine – NEJM Experience with Data-Sharing Statements
Wrap-up and Next steps
Reception to follow.
Space is limited, reserve your seat today by registering.
Joint Vivli and CDISC webinar: Why Data Sharing and Data Standardization Matters
CDISC and Vivli are presenting an exclusive conversation with Vivli Executive Director Dr. Rebecca Li, UCSF professor and Vivli Co-Founder Dr. Ida Sim, and CDISC President and CEO David R. Bobbitt who will discuss how data sharing and data standardization go hand-in-hand in the quest to move scientific discovery forward. View a recording of the webinar.
Topics will include:
- The importance of data sharing and shifting the data sharing landscape
- How to increase data utility: the benefits of data standardization
- Working together
Presenters:
David Bobbitt, President & CEO, CDISC
Dr. Rebecca Li, Co-Founder, Vivli
Dr. Ida Sim, Co-Founder, Vivli; Professor of Medicine, University of California, San Francisco
By bringing together a global community of experts to develop and advance data standards of the highest quality, CDISC creates clarity in clinical research. CDISC enables the accessibility, interoperability, and reusability of data for more meaningful and efficient research that has greater impact on global health.
Rebecca Li to present at the OHRP Exploratory Workshop
Vivli Executive Director Rebecca to will speak at the Office of Human Research Protection (OHRP) 2019 Exploratory Workshop Privacy & Health Research in a Data-Driven World on September 19. The Bethesda, Maryland, event runs from 8.15am-4.15pm EDT and will have a live webcast. The workshop agenda includes three separate sessions related to the theme of privacy and health research in a data-driven world and videos of each session will be available after the event. Dr. Li will speak on The Vivli Experience in Sharing Clinical Trial Data Globally.