Practical advice for accessing patient-level data from a data sharing platform for evidence synthesis
Since 2014, opportunities to request and access the patient level datasets collected in a clinical trial have become more commonplace. Vivli is an independent, non-profit organisation that has developed a global data-sharing and analytics platform. Patient-level data is available from 7,000 clinical trials that are provided by academic funders, pharmaceutical companies and charitable funders.
Objectives: This workshop will provide an: ● Introduction to the Vivli platform including an overview of data available and hands-on group work on how to submit a request for data ● Overview of first-hand experience of using patient level data using the data sharing platform, Vivli as a case study ● Discussion of some of the opportunities and challenges (e.g. when data needed to answer the hypothesis is not available via a single data sharing platform) associated with using patient level data
Description: This session will be a mixture of hands-on practice of exploring the clinical trial data on the Vivli platform, the submission process and what the resultant data and document package looks like. Alongside this there will be a chance to hear from researchers who have used the platform and the perspectives of patient advocates and data providers, as well as an opportunity to ask questions about the data access process. Session Plan : Welcome and Introduction to IPD Meta-analysis and Data Sharing Platforms (10 minutes) Case study: Perspectives from a data requester, patient advocate and data provider on the process for sharing data. (20 minutes) Hands-on demonstration and activity: Using Vivli to submit a data request (10 minutes) How to formulate a data sharing request (20 minutes) --Account Creation --Overview of standard information in a data request form --Governance process. Criteria used by the Independent Review Panel (IRP) to review a request Group work: Practice filling out a data request using a Cochrane Protocol (15 minutes) Report Back: What was easy about this process? What was unclear? Discussion and Questions (15 minutes) Proposers: Catrin Tudur Smith (University of Liverpool), Rebecca Sudlow (Roche), Julie Wood (Vivli) and Alan Chant (Patient Advocate and Independent Review Panel member)