Duncan Cartner

Blog written by Duncan Cartner, Research Data Concierge

The Data Concierge is a relatively new role at UCLH, put in place to help researchers get access to data. Research approvals and Information Governance are complex areas that require expert input. Accessing an individual patient’s data for direct care is a completely different scenario to accessing a large amount of data across many specialties over a date range. Data can come from many different systems (including Imaging and EHR), be structured or unstructured, and may require de-identification or anonymisation.

Navigating these requirements can be a daunting task for a research team and require input from various central teams. The Data Concierge acts as a guide to ensure next steps are always clear, directing researchers to the relevant teams as necessary, and fielding questions where possible. This allows learning from previous research applications to be preserved and ensures that the correct expert teams are contacted about relevant issues.

My prior roles had been varied, but had common themes – collecting, understanding, managing, and transforming data, and providing and explaining results, reports, and visualisations to different combinations of operational and clinical leads.

The Data Concierge is a step away from the technical provision of information, and more about communication – explaining the requirements, priorities and issues around research projects to stakeholders. Primarily this focuses on helping researchers, but it’s also important to triage requests, and bring common or urgent issues to the correct central teams for resolution. On the one hand, it has been hard to be less directly responsible for exploring data and designing useful solutions using that data; on the other hand, it is crucial to keep researchers informed and allow them to have confidence in the processes they are following, and to be involved in the decision making on high-priority problems affecting research at UCLH.

It has been exiting to be at the heart of our new Data Access Process for Research, which enables UCLH to streamline access to anonymous data for research purposes. This brings together:

research leads, conducting research across all clinical areas;
central team representatives from information governance, R&D, data architecture and data systems;
the Data Trust Committee, a group of patient and staff representatives who grant data access approvals as a mandatory part of the new process.

A particular benefit of this role is being able to see the new cutting-edge research as it emerges. Projects at UCLH are tackling bias against under-represented groups, using Machine Learning to speed up and improve interpretation of medical images, and analysing historical data to develop new or improved risk models. It is really satisfying to help make these things possible by bringing together the expertise from clinical and technical areas within the hospital and the university.