Ms. Dianne Brown1, Mr. John Liman1
1Monash University, Clayton, Australia
Biography:
Dianne Brown is a research data governance (RDG) consultant working with clinical quality registries (CQRs) and the broader research community at Monash University. Dianne began her career working globally for a strategy consulting firm and joined Monash in 2015, developing a Health Research Data Governance Framework that took a novel value chain approach to how all data activities should be governed. She works for Helix and the PVC(R-I) to support research data governance at the University including development of RDG mechanisms, coordinating COP in data linkage and providing training in health research data dictionary.
John Liman is the Senior Data Manager at the Clinical Outcomes Data Reporting and Research Program at Monash University, and has extensive experience with REDCap. He has previously assisted in developing REDCap projects for Clinical Registries, including creating custom external modules to enhance data capture and management.
Abstract:
Situation: Data dictionaries have been a common tool in IT governance to document systems. The emergence of data governance has seen an evolution in data dictionaries – they now must properly define and describe data to govern it appropriately. Research data is governed at a project-level and within health research tools such as REDCap are used to collect and store data securely but also undertake governance activities such as quality checks. Currently REDCap has the capacity to produce an IT focussed data dictionary, which has limited efficacy as a data governance tool as it is not able to define or provide other metadata for each data element. The project must, therefore, maintain two data dictionaries which is inefficient and leads to inconsistencies.
Tasks: To create a custom Data Dictionary external module within REDCap that could be used as a data governance tool to communicate with stakeholders such as funders, ethics committees, collaborators and potential re-users of the data.
Action: Based on a successful Monash Helix Health Data Dictionary template, a mapping to existing REDCap functionality was undertaken and additional metadata items were created.
An external module for REDCap was developed and deployed
Result: The resulting addition to REDCap’s codebook can be output to Word in a readable and editable format that allows each of the data elements to be fully defined, a purpose for collecting the data and a source identified. This will create the basis for further refinement when additional metadata requirements are identified in the future.