PSP099: Year of Birth 

Report Year of Birth (YoB) for participants recruited to NIHR Research Delivery Network (RDN) Portfolio studies unless the study is exempt because year of birth is not routinely collected. 

• Collection of Year of Birth forms part of the LPMS Data set.

• Data templates detailing the fields requested have been developed and shared with local Year of Birth Leads who will request the data every quarter in line with official data cut dates.

• Detailed information about the project and expectations is provided below in section 1.1

• Any concerns about the Project or data collection process should be directed to the regional Year of Birth Lead in the first instance.

The NIHR has been collecting data on the year of birth of participants recruited to NIHR Portfolio studies since September 2021. This data collection helps to build an understanding of the demographic makeup of participants in NIHR Portfolio studies and supports NIHR's ongoing work to ensure fair and equal access to research.

Why is collecting the Year of Birth important?

Having comprehensive data on the YoB participants recruited to studies allows the NIHR and the research community across the UK to assess the extent to which the age profiles of the participants recruited to NIHR RDN Portfolio studies match the age profiles of the incidence of specific diseases. This in turn allows us to identify populations where research opportunities need to be improved.   

What are we asking Trusts to do?

We are asking Trusts to continue to collect the YoB of participants recruited to NIHR Portfolio studies within their Local Portfolio Management Systems (LPMS) (e.g. Documas, Edge, Reda etc) or equivalent and to share this data with us.

The project has been running for three financial years, based on the project learnings we have streamlined the data collection and management process. We would like the data shared to be in the form of a line listing of recruited participants including the following fields:

1. Portfolio ID

2. Trust name

3. Trust code 

4. Site name 

5. Site code 

6. Participant Year of Birth

7. Date participant was recruited 

From the YoB and date recruited we will  calculate the age of the participant and the age ranges they fall into. Participant age ranges will be split into different age categories for example: (0-15, 16-24, 25-34, 35-44, 45-54, 55-64, 65-74, 75-84, 85+). Each RRDN is provided with a Google Sheet template in which to provide the data.   

When do you need to provide this data by and for how long?

Trusts are asked to share YoB data on a quarterly basis. Data should be sent to your regional YoB Project Lead when requested. Your YoB Lead will be in touch with you to support you in doing this. 

For information: dates by which we require data for FY2024/25 

1. Quarter 1 (1 April - 30 June 2024), Data Cut: 26/07/2024, Internal Deadline: 09/08/2024

2. Quarter 2 (1 July - 30 September 2024), Data Cut: 18/10/2024, Internal Deadline: 06/12/2024

3. Quarter 3 (1 October - 31 December 2024), Data Cut: 26/01/2025, Internal Deadline: 09/02/2025

4. Quarter 4 (1 January - 31 March 2025), Data Cut: 26/04/2025, Internal Deadline: 10/05/2025 

Is this data needed for all studies / participants?

There may be some studies where the YoB is not available. In these instances, studies are exempt from providing this data. We have previously stated that studies tagged as rare disease studies can be excluded at the discretion of Trusts due concerns around the potential identification of participants recruited to rare studies in rare diseases. However our learnings have enabled us to re-evaluate this exclusion. There are a number of studies tagged as a rare disease study with large sample sizes. As we do not upload YoB to the dashboard, we report aggregate data, and we only list studies with 10 or more rows of YoB data in any study lists; there is very little chance of participants being identified.

The benefits of collecting this data for rare diseases greatly outweigh the risks of participants being identified. We are therefore requesting YoB data for all studies where this YoB data can be collected.

What do we plan to do with the data?

The data will be stored on the RDN' s secure Google Hub and Data Warehouse. As with the data collected in the pilot phase we have created the QlikSense Dashboard on the NIHR Open Data Platform (ODP) to visualise this data. within the Dashboard, the data is presented in an aggregated format by RRDN, Trust and study. We will also by analysing the data to assess whether the age profiles of the participants recruited to NIHR Portfolio studies match the age profiles of the incidence of certain disease areas of national significance.

The NIHR Governance team and the Chief Information and Technology Officer (also the Senior Information Risk Officer, (SIRO)) have reviewed the project and data fields to be collected. The data being collected does not include any personal identifiable data and as such they have issued a statement confirming there are no GDPR or other data protection concerns.

The statement is available in a letter in PDF form. To request a copy please see contact below.

If you have any queries about the provision of data or the deadlines please contact your regional YoB Project Lead in the first instance who will be able to assist you. Please note with the transition from the CRN/LCRNs to the RDN/RRDNs, YoB Project Lead contacts may change.

Shamaila Anwar

Senior Project Lead

shamaila.anwar@nihr.ac.uk

DHSC: Department of Health and Social Care

GDPR: General Data Protection Regulation

LPMS: Local Portfolio Management Systems

ODP: Open Data Platform

POF: Performance and Operating Framework

RDN: Research Delivery Network

RDNCC: Research Delivery Network Coordinating Centre

RRDN: Regional Research Delivery Network

SIRO: Senior Information Risk Officer

TYA: Teenage and Young Adult

YoB: Year of Birth

Version 1.3 

November 2024