Research Data Access

Our Research and Digital Information Systems (DIS) teams offer various services such as the Research Data Access request service, which provides previously collated research data and de-identified YTH data sets for research projects.

Where appropriately justified and approved, requests for identifiable or pseudonymised data may also be considered, subject to additional legal, ethical, and information governance requirements.

This service supports both feasibility work and funded research projects, helping researchers access the data they need in a safe and supported way, with appropriate guidance.

Examples of current Research Data

BaBi

The Born and Bred in (York & Scarborough) study (IRAS 226266) is a large longitudinal research programme capturing data on the local health, care and education trend for children growing up in the Scarborough and York areas. BaBi works by collecting routing anonymized data of the parent’s pregnancy and the child’s birth, health and development.  This resource provides a valuable dataset for research into population health, inequalities, and long-term outcomes in children.

YoGI

The YTH FIT Colorectal Database (IRAS 369902) has over 7000 records of consenting participants who completed a faecal immunochemical test for haemoglobin (FIT). The study aim was to identify the optimal diagnostic and management FIT-based strategies for patients initially presenting to primary care with abdominal symptoms This pseudonymised dataset includes the presenting symptoms, onward referral and management including blood tests and investigations, and referral diagnosis. The data can be exported into a variety of output formats for analysis.

Costing involved in data access and transfer process

Depending on the type and complexity of your request, there may be costs associated with:

• Data extraction
• Data cleaning
• De-identification

 If you are writing a grant application, a cost estimate can be provided in advance of the request to support your submission.

How to apply for a research data request

If you require data to use on your research project, you can request this using the Research Data Access Request Form here. Please complete as much detail as possible, including confirmation of any approvals you have received for your research project. Please refer to the guidance document If you have any questions around completing any aspect of the request form, please email yhs-tr.rdas@nhs.net.

Once the request form is received, this will be reviewed by the Research Data Access Sub-Group (RDAS)

You may be contacted for further information if required. A decision and next steps will be communicated following review.

Applications will be reviewed on an ongoing basis as they are received.

The aim is to:

• provide an initial response to applicants within two weeks of submission
• provide access to approved data within 90 days of approval, where feasible

 

Timelines may vary depending on the complexity of the request, with flexibility applied for more complex data requirements.