Using your records for COVID-19 research
As a Children of the 90s study participant, you have played a vital role in tackling COVID-19 by completing the COVID-19 questionnaires. These questionnaires aim to understand how many people may have had COVID-19 and explore the full impact of lockdown on your health and wellbeing. Research findings from the questionnaires are already informing the Government’s SAGE expert group who advise on UK COVID-19 strategies and Public Health England.
As well as using your questionnaire responses, Children of the 90s are connecting to routine health data from official records - known as data linkage - to help study COVID-19. This is a secure and efficient way that data collected on participants can be used to make a difference – and at the heart of how Children of the 90s can help. For example, linked health records can be used to understand how COVID-19 may have affected how people have accessed NHS services.
As a participant in Children of the 90s, we have already let you know about how health records will be linked to Children of the 90s data and used in research for a range of projects for ten years now. We wanted to tell you about some of the ways your linked records are helping our COVID-19 research and to remind you that you can opt-out of this if you do not want your records used in this way.
Linking data in this way has been really useful in previous research projects for both physical and mental health and we are now using the same approach for COVID-19 research. As with all our studies, researchers only see 'de-identified data' (with your personal information removed) and all research we do is governed by the Data Protection Act (2018). If you have previously opted out of data linkage, your data has not been used in this way.
For our COVID-19 research we are using data from the following sources: (1) a new nationwide NHS COVID-19 database, (2) local NHS data from the Better Care South-West Partnership, and (3) the COVID-19 Symptom Study App and (4) Public Health England data on COVID-19 test results and hospital admissions. More information about how we link your Children of the 90s data with this type of information for both COVID-19 and other research projects can be found here.
Below are answers to frequently asked questions about the data linkage processes for COVID-19 research:
What are the aims of the COVID-19 data linkage research project?
Our research aims to help understand COVID-19 and its impact on social and health-related outcomes, with the following specific aims that will use both Children of the 90s and linked data in order to:
- Provide estimations of how many confirmed cases of COVID-19 are in Bristol and surrounding areas and insights into the spread of the virus
- Help to identify risk factors for more severe COVID-19 symptoms and what care provisions could address this
- Help to identify and understand the long-term health and social impacts come from having the virus
- Understand the impact of social distancing restrictions on mental health, physical health, social and economic status (e.g. employment, housing, education, family dynamics).
Where will data be connected to the Children of the 90s?
- We will link to a new NHS database of COVID-19 records for everyone in the UK. This contains the parts of your health record that are relevant to COVID-19 research. Some of these will be from your GP, hospital, and COVID-19 testing records. We will also link to data on COVID-19 testing and hospital admissions data collected by Public Health England.
- To join up health records in Bristol, we have joined a new partnership called the Health Data Research UK (HDR UK) Better Care South-West Partnership This new database brings together records from GPs (Bristol, North Somerset and South Gloucestershire), hospitals (the Bristol Royal Infirmary (BRI), Southmead and Weston General) and from other local NHS care providers (such as those giving community support for mental health and learning difficulties).
- We will link Children of the 90s questionnaire data to the new COVID-19 Symptom Study, which we anticipate that a proportion of Children of the 90s participants are using to share their COVID-19 symptoms already.
What is the process for linking data and what information will be used?
The following process will be carried out to link Children of the 90s data to the data sources described above:
Step 1. Secure upload of your information to NHS Wales Informatics Service
In order to link your Children of the 90s data to your NHS records we will transfer your name, family name, date of birth and a unique study ID to NHS Wales Informatics Service (NWIS) using their secure file upload website. Where we already hold this, we will also transfer your NHS ID, as this will improve the accuracy of the match between data sources. To make the link to the COVID-19 Symptom Study app data stronger, we will also use your email address, where we have this.
Step 2. Anonymising your personal data to a ‘barcode’ type ID number.
The NHS data managers at NWIS will encrypt and de-identify your data and then assign an ID (known as an Anonymous Linking Field). This is an ID set up for this task and not used elsewhere. This process is largely automated and runs on secure NHS computer servers. The staff running this are vetted NHS employees who help manage the NHS patient register. Their work is subject to NHS audits and contractual safeguards.
Step 3. Generating a study ID for your Children of the 90s data and uploading to a secure computing system
To meet strict security standards, we store data on a secure computer system (an external server) that is accessible to small number of data managers. We send your Children of the 90s (which cannot be identified) using data to this secure computer system. Currently, we are using a secure computer system based at the University of Swansea – who have developed it with the NHS specifically for the safe use of NHS records in research. Children of the 90s control how your data are used in this secure computer system using the same rules that have always applied (See our commitment to you).
Step 4. Linking the anonymised data from different sources
Staff based at the secure computer system will then use the Anonymous Linking Field together with the unique study ID to link your Children of the 90s data with data from other sources. They do this without any access to your identifiers – it is anonymised. The linked data are then moved to the Children of the 90s research computer system and controlled by Children of the 90s staff.
Where are my linked records stored?
- Children of the 90s hold some of your linked records on the study’s secure computer system at the University of Bristol. This computer system is part of our ISO27001 Information Security system which is audited by the NHS and independent experts. The computer system has been built by the University IT team and is managed by Children of the 90s staff.
- The national NHS database is held by the NHS. A copy of this will be held in a de-identified form on the secure servers. Our current system is developed for the SAIL Databank (this is a database of NHS and other records of everyone in Wales). Other secure servers (based at the University of Essex and the University of Edinburgh) will also be used at later stages of the project. These servers have a world-leading reputation for being the most suitable place to process health records for research. They are used for many of the UK’s biggest health research studies, including Children of the 90s. Children of the 90s has its own one of these secure computer systems, which is managed by Children of the 90s staff, but is physically located at the University of Swansea. This computer system only holds de-identified data.
- The local NHS server data is held by the NHS GP led organisation in Bristol, North Somerset and South Gloucestershire called the ‘Clinical Commissioning Group’. This part of the NHS is in charge of planning all NHS services across the area. This computer system is located in Bristol and run by NHS staff. It only contains de-identified records.
- A copy of the data from the COVID-19 Symptom Study app (Kings College London) is held in anonymised form by the SAIL Databank (University of Swansea).
Why are you storing data in a secure computer system?
We are using asecure computer system for a couple of main reasons:
1) These secure computer systems are purpose built to allow secure research to take place using health and other records. This means they are ideal for research using linked official and study records. It is a complicated task to build and run such a computer system, and developers at secure computer systems are experts in this. Their work is checked through audits by the NHS and independent information security experts.
2) Our ability to answer the COVID-19 research questions will be improved if we use your data with the data from other studies similar to Children of the 90s, or other types of study such as the COVID-19 Symptom Study. This will provide a wider range of data, give more confidence in our findings and increase the diversity of participants included in the research (e.g. different age groups, people from different ethnic backgrounds, people with particular characteristics – such as twins).
It is possible to use the secure computer system in ways which allow lots of organisations to contribute data without any of the others knowing who each person is. Also, each organisation is able to control the use of their data to the rules they set – this means Children of the 90s can maintain the commitments we have made to you.
Who will be using my data?
Your data will only be shared with approved researchers for research that has been approved by Children of the 90s. As with all research using your Children of the 90s data, linked data is processed using a unique ID number (like the barcode ID on your questionnaires). All your personal details (such as your name) will be removed and researchers will not be able to link your answers back to you.
What if I change my mind about taking part in data linkage or any other aspect of Children of the 90s?
As with previous data linkage projects, you have the right to opt-out of your records being linked to Children of the 90s for the COVID-19 research project. If you want to opt-out of COVID-19 research data linkage or to check if you have opted-out of data linkage in the past then please let us know by emailing email@example.com. We would be very happy to answer any questions about this.
What if I have a question about this project not discussed here?
We’re happy to answer any questions relating to the project, just contact us at firstname.lastname@example.org