Developing a new Governance Approval Process to support federated discovery and meta-analysis of data across the UK through the CO-CONNECT project.

Objectives To develop a new approval process for federated data custodians to install and support platform which enables researchers run from one website, instantaneous, aggregate-level queries determine the number of patients in each dataset meet their research criteria.
 agree security controls across protect patient confidentiality whilst also providing this automated capability reducing burden on custodian manually provide information.
 ApproachThe COVID - Curated Open aNalysis aNd rEsearCh plaTform (CO-CONNECT) has integrated Cohort Discovery Tool into Health Data Research (HDR) UK Innovation Gateway website is connecting >50 different datasets. The underpinning architecture novel, without precedent at such scale UK. We found that although recognised benefits platform, many were unclear formally approve model. have worked co-develop required processes document controls.
 ResultsWe vast differences technical knowledge infrastructures custodians, especially small groups hosting consented cohorts verses larger organisations who host manage routinely collected data. A model approvals evolved these 2 separate groups:
 Consented cohorts: 2-stage pre-assessment need DPIA and/or completed DPIA. All returned positive outcome deemed no personal identifiable information was being used.
 Unconsented population level data: 4 documents approved by committees within custodian: DPIA, Access Application, Security Risk Assessment, Disclosure Control Assessment.
 As novel we developed explainer videos detailed step instructions.
 ConclusionWe recommend technologies/models initiatives are not covered traditional access request process. Increased investment teams governance IT applications been overwhelmed increased demand services review COVID-19 related projects would be welcomed.