The Research Data Concierge Service is available to researchers who are looking to use UCLH data for a research project. The service is open to researchers from UCL and UCLH as well as external researchers. The Data Concierge can help researchers to navigate through these steps, providing guidance on the systems involved and contacting the relevant people to assist with each requirement.
The key objectives of this service are Communication and Coordination - a single point of contact to monitor the progress of a study, from gaining the necessary approvals, defining a data specification, and delivering data ready for analysis.
We work closely with the UCL Joint Research Office and the UCLH Information Governance team. As part of the Clinical and Research Informatics Unit, the Data Concierge also has links with UCLH Information Services and Research Data Systems, as well as researchers who have already been through the part full process.
The Research Data Concierge Service also manages data requests for the Data Access Process for Research (DAP-R). This is an HRA-devolved internal UCLH approvals process, providing a streamlined approvals process for in-house research studies that fulfil certain criteria. (Link to the DAP-R)
Is it research?
Projects using hospital data may not be research. For example, service evaluations and audits are not defined as research, and the route for gaining data access is different.
As a general rule, projects"...which the attempt to derive generalisable or transferable new knowledge to answer or refine relevant questions with scientifically sound methods..." fall under the Research remit. (Defining Research Table, HRA).
Non-research
For non-Research projects, please contact your divisional Business Information Partner or the central Information Services. If it is not clear whether your project is research, the MRC HRA Decision Tool can help. Alternatively, please contact the Joint Research Office (uclh.randd@nhs.net) for assistance.
Research
For Research, the route to obtaining access will vary depending on context:
Researchers from within UCL / UCLH proposing a data-only study using exclusively anonymised data can apply via the Data Access Process for Research (DAP-R). For more information, including the criteria governing this process, click here.
To begin this process, please fill out a Data Request Form on DEX (Link).Researchers from within UCL / UCLH whose study does not fall within the criteria of the DAP-R will need to obtain ethical approval from the HRA or related external bodies.
To begin this process, please fill out a Data Request Form on DEX (Link), and contact the Joint Research Office (uclh.randd@nhs.net) for help with setting up sponsorship and applying for ethical approval.Researchers based outside UCL / UCLH may have an existing study sponsored externally, and wish to add UCLH as a site.
To begin this process, please contact the JRO (uclh.randd@nhs.net) for help with registration and contracts.
![[DEX logo]](/sites/default/files/inline-images/dex-logo-PNG.png){kind=logo}
The Data Explorer, DEX for short, is a portal designed to allow UCLH staff to formally request access to patient data. A user-friendly web interface enables staff members to create and follow the progress of data requests through a series of streamlined processes, underpinned by a robust Information Governance (IG) framework.
DEX can only be accessed using UCLH credentials, and only from within the UCLH network.
Electronic Health Record data is primary accessed via the Epic data warehouse, which receives daily extracts from the live system. Data can also be drawn from other systems, such as Onbase, PACS, and the Archive Data Store. Theoretically, any data stored by UCLH can be the subject of research, but some data sets are more commonly sought than others.
Only authorised UCLH staff have direct access to these data. Researchers will be provided a subset of data – the minimum required to answer the research question. This data must be clearly and unambiguously defined before work on extraction can begin.
No confidential or personal identifiable data will be included by default. To be included, any potentially identifiable data would need to be essential for the research initiative. Extractions inclusive of such data will need to be ethically approved by an appropriate governing body, as well as reviewed and permitted by the Information Governance team.
Data Items
Examples of data items may include:
- Inpatient admission, outpatient appointments, day cases.
- Medication & procedure orders.
- Diagnoses, problem list, reason for admission.
- Lab results, vital sign measurements.
Defining your cohort
This can depend on your project, but typically, you would specify:
- A date range attached to a specific date item.
- For example: admission date or discharge date; the date a test was taken or the date of its result.
- Inclusion / exclusion criteria for the study subjects.
Data Delivery
Once the data has been defined and is ready to be extracted, it must be stored for analysis. The storage solution must be approved by the Information Governance team.
UCL and UCLH support research using multiple platforms, such as:
HRA - Health Research Authority
The HRA is the external body responsible for overseeing, reviewing and approving health research in England.
Link
REC - Research Ethics Committee
RECs “review research applications and give an opinion about whether the research is ethical”. Usually this is done as part of the HRA application process.
Link
CAG - Confidentiality Advisory Group
The CAG “provides independent expert advice to the Health Research Authority and Secretary of State for Health on whether an application to process patient information without consent should or should not be approved”.
Link
NDG - National Data Guardian
The NDG “advises and challenges the health and care system to help ensure that citizens’ confidential information is safeguarded securely and used properly”.
Link
ICO - Information Commissioner’s Office
The ICO is an “independent authority set up to uphold information rights in the public interest, promoting openness by public bodies and data privacy for individuals”.
Link
5 Safes framework
The Five Safes model is a popular framework for designing, describing and evaluating access systems for data, used by data providers, data users, and regulators.
