Vivli Launches COVID-19 Portal to Share Clinical Trial Data

March 25, 2020 - Vivli announced that it recently launched a COVID-19 portal for sharing completed interventional treatment clinical trial data.

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The nonprofit Center for Clinical Research Data stressed that the initiative would waive all member and user fees for sharing and access.

“Today, we are announcing this initiative as it is so important for the entire data sharing community to come together and do everything we can to share the data from these completed clinical trials,” Rebecca Li, Vivli executive director said in the announcement.

“Sharing data transparently and openly is the best way to honor the decisions made by participants in these trials and bring us closer to safe and effective treatments and vaccines.”

Leader advocates who strive for more open data sharing by the National Institutes of Health (NIH) echoed similar concerns in a Science article published in the Policy Forum section.

These leaders believe that additional changes are needed to enhance the current draft of the NIH Data Sharing Policy. Although the draft is generally supportive of data sharing, it needs “strengthening if we are to collectively achieve a long-standing version of open science build on the principles of findable, accessible, interoperable, and reusable data sharing.”

“We suggest that limited data sharing arises not from culture but from policy. NIH has outsized influence to adjust these incentives by mandating and making funding contingent on data sharing, realigning researcher behavior with core values of scholarship. Once data sharing becomes the norm, researchers and the general public will benefit and in turn, sharing will itself become an incentive,” researchers concluded.

Vivli was initially created to make data sharing quick and easy. Ida Sim, Vivli co-founder and lead author of the Science article, is pushing to open trials for researchers everywhere to uncover all vital data.

“Vivli has been at the forefront of data sharing and I am delighted to see us do all that we can to advance the knowledge around the COVID-19 pandemic. Vivli was created to make data sharing practical and easy to do. COVID-19 trials should be made open to all researchers so that no stone is left unturned in reviewing and analyzing data,” she explained.

In January 2020, the American Medical Informatics Association (AMIA) recommended that NIH significantly revise its Data Sharing Policy, explaining that “rant applications are not scored on the quality of their data-sharing plans.”

AMIA also noted that NIH made its policy available to other researchers and the public and that the incomplete sharing plans may have contributed to “data silos.” A comparison of the 2018 and 2019 proposals reveals very few changes.

“We fear these proposals will increase researcher burden and reinforce data silos,” said Jeffery Smith, MPP, AMIA vice president of public policy. “Given recent advances in computing power and storage capacity, the NIH must use this policy to facilitate new data-driven discoveries, continuous learning, and breakthroughs in treatment.” 

AMIA believed that NIH’s policy undervalues the importance of data management and sharing as a vital part of modern research. They also voiced that a recently funded NIH project will make managing ever-increasing volumes of data more challenging. 

The policy individualizes NIH Institutes, Centers, and Offices (ICOs) and encourages them to develop their own data management and sharing policies without any legitimate rules or guidelines. 

“It is imperative that the NIH view scientific data as the principal result of scientific research- not the conference presentation or journal publication describing the data,” said Patricia C. Dykes, PhD, RN, FAAN, FACMI, AMIA board chair and program director of research at the Brigham and Women’s Center for Patient Safety, Research, and Practice.

“As the world’s largest funder of biomedical research, the NIH must craft a policy that leverages scientific data as a strategic asset.”