Big Data Sharing Meeting

Hosted by the Circle of Service and the Health Research Alliance

September 19, 2017

To review the information from the two webinars leading up to this meeting see below:

Data Sharing Webinar #1 (7/11/17): Intro to Data Sharing
This 1 hour webinar introduced participants to the various types of data and data sharing platforms currently available.   Recording of the webinar is available here, slides from our presenters can be found by clicking on the presenter names.
Meghan Byrne, PhD, Senior Editor, PLOS ONE
Andrew L. Hufton, PhD, Managing Editor, Scientific Data, Nature Research

Data Sharing Webinar #2 (8/10/17):  Intro to sharing Big Data
The recording of the second in the data sharing series is available here, slides from our presenters can be found by clicking on the presenter names.
Ben Busby, PhD, Genomics Outreach Coordinator, NCBI
Adam Resnick, PhD, Director of Children’s Brain Tumor Tissue Consortium, CHOP

 September 19th Meeting Agenda

Speaker Bios

Want to prepare for the in-person Big Data meeting?  Read these Data Commons Guidelines for Funding Organizations prepared by Bob Grossman.

The meeting will be held on Tuesday, September 19 from 8:30am to 3:30pm.

A pre-meeting reception will be held on September 18, at 6:00pm.

Both the meeting and the reception will be held at the new AbilityLab (formerly the Rehabilitation Institute of Chicago), one of the foremost rehabilitation hospitals in the country.  The address for the AbilityLab is 355 E. Erie St., Chicago, IL 60610.

Meeting mission statement / objectives

  1. To reinforce funders’ desire to encourage data sharing and provide resources to facilitate data sharing policies.
  2. To provide clarity with respect to the vocabulary, the concepts, and the benefits of data sharing.
  3. To educate funders about options currently available for sharing large research datasets and understand what it takes to implement and enforce data sharing within your organization.
  4. To provide a forum at which funders can discuss the gaps in data sharing platforms, and what is philanthropy’s role in filling those gaps. Could jointly sponsoring platforms for data sharing (for example data Commons that are shared and funded by multiple HRA members) meet unmet needs in data sharing infrastructure?


Representatives of private funding organizations that support biomedical research that results in data sets that if shared with the broader community would increase the impact of their research are encouraged to attend.  If your organization believes that:

  • data sharing is not just defined as sharing with defined collaborations
  • sharing data is also important in helping others critically evaluate and reproduce an authors’ claims
  • in fact, much of the impact of sharing data can be derived from enabling others to re-use shared data in separate research projects

This meeting is for you.

Assumptions about you and your organization

  • You have already decided that you want your investigators to share data.
    • Some of your investigators generate “Big Data”.
  • You may not yet:
    • Have developed formal data sharing policies.
    • Require your investigators to have a data sharing plan.
    • Score applications based on an investigator’s data sharing plan.
  • You may have:
    • A lot of questions about what is data sharing.
    • Confusion about the boundaries between a technology platform vs. the policies that govern data on that platform.
    • Vague information, or even misinformation, about existing data sharing platforms.
    • Lack of understanding about the implications of sharing data vs. sharing “big” data.
  • You want to learn more, hear some ideas, but probably not make any significant decisions.