A game changer in the paradigm of the silo-based service delivery – The integrated project delivery of a secure digital data capture for clinical trials at University of Sydney

Dr Daniele Vicari1, Jessica  Cornock2

1Research Portfolio – SIH, University of Sydney, Sydney, Australia, daniele.vicari@sydney.edu.au

2ICT, University of Sydney, Sydney, Australia, jessica.cornock@sydney.edu.au

 

Abstract

With no unified system to collect clinical trial data, researchers were often making use of laborious workflow including convoluted spreadsheets and paper questionnaires. Aiming to provide a robust and supported data capture and survey capability for researchers, the Information and Communication Technology (ICT) and Research Portfolio started a collaboration in 2017 and ran a joint project enhancing the University’s installation of REDCap.

REDCap is an established, secure web application for building and managing online surveys and databases. It is ideal for collecting and managing participant data with features supporting longitudinal data collection, complex team workflows and exports to a range of statistical analysis programs.

Description

Most Universities have been challenged to deliver the best infrastructure in the rapidly evolving research ecosystem with often each sector working independently. Thus, creating a gap between the end users and professional/operational teams. To break the silo-based paradigm, ICT teamed up with other professional services in the research portfolio and took an Integrated Project Delivery method to implement a digital data capture platform among clinical trial and other studies. We will present here the strategy and outcomes of this initiative. The agile and joint decision-making allowed several key capabilities to be delivered from 2017 to 2018. For example:

  • REDCap was updated from version 5.x to 7.4 (now 8.3) providing 3 years-worth of development updates.
  • REDCap is now available to any researcher with an Australian Access Federation (AAF) identity. Increasing the ability for collaboration and decreasing the administrative burden on ICT support.
  • REDCap is now cloud-hosted on AWS which has made it a high-availability system with expectations of minimal unscheduled down time.
  • In-house training and one-to-one consultations allowing the platform to be used widely including small clinical trials and other research projects (highlighted in figure 1).
  • Most importantly, a collaborative technical and business support structure has been established across ICT, Digital Research Support and Clinical Trials support.

Figure 1: REDCap project types in University. Translational research 1 (applying discoveries to the development of trials and studies in humans). Translational research 2 (enhancing adoption of research findings and best practices into the community).Repository (developing a data or specimen repository for future use by investigators)

Conclusion

All of these enhancements have led to a significant increase in the number of users and projects utilising this system.

The initiative of integrating teams such as ICT, Digital Research Support and Clinical Trials support demonstrated an effective and agile approach to deliver a clinical trial capture data tool while allowing many other researchers to make use of this platform across the diverse disciplines.  Researchers are able to collect their data in a structured database with proper access control (university credentials) and rigorous audit trail. Thus, changing the culture of data collection while improving research integrity and compliance.

This Integrated Project Delivery method established an active teamwork which is working now in improving the maintenance and feature enhancement of REDCap including automated upgrades, integration with other systems, and customised project developments.

In addition, the service delivery can be rapidly optimized once the research support serves as a conduit between the researchers (end users) and the service provider (ICT).


Biography:

Daniele has worked as biochemistry researcher in the past and she kept her passion for teaching/training while working in several educational institutions in Brazil, USA, Switzerland, and Australia. Taking advantage of her extensive experience as mentor and teacher, she is currently supporting, training and advising staff and student researchers in how to use the digital tools to achieve best research data management practices in the University of Sydney.

About the conference

eResearch Australasia provides opportunities for delegates to engage, connect, and share their ideas and exemplars concerning new information centric research capabilities, and how information and communication technologies help researchers to collaborate, collect, manage, share, process, analyse, store, find, understand and re-use information.

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