The lack of access to analysable Individual Participant Data (IPD) from clinical trials has a detrimental impact on knowledge creation as well as on producing the reliable evidence needed for evidence-informed decision making.
After studying these issues, we started exploring what is needed to make data more accessible and who has been influencing this process and how. In these videos, originally part of the Cochrane Learning Live and GESI webinar series, Karmela Krleza-Jeric presents the story of data sharing including definitions, terminology, barriers and facilitators, and the access to clinical trial data, dynamics of its development, and who and how is influencing it. She also introduces the idea of the IMPACT Observatory as means to assess and inform this process.
This webinar was aimed at anyone interested to learn about the broad sharing and access to the information gathered by clinical trials, including clinician trialists and their teachers, study participants, systematic reviewers, funders, editors, consumers, and other evidence users.
In this session we aimed to inform clinician trialists what to do with trial data, reviewers who need to know how to get such data for secondary analysis, and their teachers, as well as study participants, funders, editors, consumers, regulators and any other evidence user.
The webinar was delivered in February 2019 and was organized by Cochrane's Membership, Learning and Support Services, in partnership with the Global Evidence Synthesis Initiative (GESI).
Below you will find videos from the webinar, together with accompanying slides to download [PDF].
Part 1: Presentation
Part 2: Questions and answers
Dr Karmela Krleza-Jeric (MD., MSc., PhD), is leading the IMPACT Observatory, hosted by MedILS. Her research interests are related to opening of research data and its impact on research, research integrity, reliability of evidence, creation of knowledge. Her present research focuses on the analysis of the dynamics of opening of clinical trial data including barriers and facilitators, and the role of various players and knowledge users and its impact on research. More info can be found here.