The Grand Rounds session will be held on Friday, April 19, 2024, at 1:00 pm eastern.
The YODA Project promotes open science, research transparency, and the sharing of clinical research data to support healthcare research. Through the project, researchers can request access to deidentified participant-level clinical trial data and research reports.
Ross is a professor of medicine and public health at Yale University and codirector of the YODA Project.
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.
