Cochrane consumers and data sharing of clinical trials - a survey; IMPACT (IMProving Access to Clinical Trials data) Observatory

ID: 

19202

Session: 

Long oral session 19: Linked data & data sharing

Date: 

Friday 15 September 2017 - 11:00 to 12:30

Location: 

All authors in correct order:

Krleza-Jeric K1, Jeric P2, Marusic A3
1 Ottawa Group-IMPACT Observatory, and MEDILS, Canada and Croatia
2 Access Macquarie, Macquarie University, Sydney, Australia
3 Department of Research in Biomedicine and Health, University of Split School of Medicine, Split, Croatia
Presenting author and contact person

Presenting author:

Karmela Krleza-Jeric

Contact person:

Abstract text
Background: As inclusion of the participant-level data (IPD) in Cochrane reviews would increase the reliability of evidence gained by these reviews, and speed knowledge creation, there is currently a great interest in and lively activity aimed at increasing public sharing of clinical trial (CT) data. The IMPACT Observatory is the methodology of choice for systematic assessment of this process which merits follow up due to its complexity.

Observation or natural experiments assess the impact of interventions of one or several players with the goal of informing the process, in our case the transition of CT data sharing and reuse. The data-sharing culture of consumers as one of the key players is expected to play a crucial role in increasing the sharing and reuse of CT data.

Objectives:To explore the culture of members of the Cochrane Consumer Network (CCNET) regarding CT data sharing and reuse.

Methods:We conducted a web survey to assess the data-sharing culture of consumers. The survey, consisting of a short introduction and 28 questions, was sent to members of CCNET.

This survey is part of the IMPACT Observatory set of surveys aiming at assessing the data-sharing culture of different stakeholders. Survey questions are designed to enable comparisons with findings from ongoing surveys of researchers and editors.

Results:We launched this survey in September 2016, and so far have received 69 responses. We will present the results of the survey at the Summit.

Conclusions:The CCNET survey will contribute to understanding and assessing the culture of consumers regarding sharing and reuse of CT data and thus inform the dynamics of the ongoing transition process of data sharing, including its barriers and opportunities.