JMIR Publications

ABSTRACT

Background:

The CO-CONNECT project worked with 22 organisations across the UK to build a federated platform enabling researchers to instantaneously, and dynamically query federated datasets to find relevant data for their study. Finding relevant data takes time and effort reducing the efficiency of research. Although data controllers could understand the value of such a system, there were significant challenges and delays in setting up the platform in response to COVID.

Objective:

To present the challenges and lessons learnt from the CO-CONNECT projects to support other similar initiatives in the future.

Methods:

The project encountered many challenges including the impacts of lockdowns on collaboration, understanding the new architecture, competing demands on people’s time during a pandemic, data governance approvals, different levels of technical capabilities, and data transformation to a common data model, access to granular level laboratory data, and how to engage public and patient representatives meaningfully on a highly technical project.

Results:

To overcome these challenges we developed a range of methods to support data partners such as explainer videos, regular short touch base video conference calls, drop-in workshops, live demos, and a standardised technical onboarding documentation pack. A four-stage data governance process emerged. The patient and public representatives were fully integrated team members. Persistence, patience, and understanding were key.

Conclusions:

We make 8 recommendations to change the landscape for future similar initiatives. The new architecture and processes developed are being built upon for non-COVID-19 related data, providing an infrastructural legacy. Clinical Trial: NA