June 30, 2017: The Yale Open Data Access (YODA) Project: Lessons Learned in Data Sharing

Speaker

Joseph Ross, MD, MHS, Section of General Internal Medicine, School of Medicine, Center for Outcomes Research and Evaluation, Yale-New Haven Hospital

Topic

The Yale Open Data Access (YODA) Project: Lessons Learned in Data Sharing

Keywords

Pragmatic clinical trial; Clinical research; Health Data; YODA, Yale, Open Access

Key Points

  • Yale’s Open Data Access (YODA) Project is committed to transparency and good stewardship of data usage
  • The YODA Project tenet that ”Underreporting is Scientific Misconduct” emphasizes the importance of open data sharing
  • Only about 50% of clinical trials are never published, many only partially reported
  • The YODA Project is maximizing value of collected data while minimizing duplication of data
  • An application process and secure platform help the YODA Project team to prevent distribution and protect patient privacy
  • YODA’s third party approach in removes influence over access, and is in best interest of all stakeholders

Discussion Themes

No requests have ever been rejected, but there have been cases where YODA could not provide the data needed (i.e. CT scans from a trial due to de-identification and cost).
YODA first published requests online right away, but received pushback from investigators because they thought it was unfair for their requests to be published before they could start work. Now, they are only published when they gain access to the data, in order to still maximize transparency.
YODA Project is expensive, but funding has come in through industry (e.g. Johnson and Johnson) so users continue to have access without a fee.
Incentivizing the movement of data from academicians to a common platform is a challenge moving forward because many feel they do not need SAS software and just want to disseminate themselves, so YODA will keep working toward its goal of open access.
Should journal editors have authors clearly state their relationship with the data? Several authors published data from the SPRINT data release and there was nothing in the article stating these authors had nothing to do with the trial.

For More Information

Read more about the YODA Project at www.yoda.yale.edu

Tags
#pctGR, @YODAProject, @Yale, @PCTGrandRounds, @Collaboratory1, #HealthData