Understanding Society links survey answers to health records in two ways – through linkages that we agree ourselves with the NHS and through the UK Longitudinal Linkage Collaboration. Linkage will only take place when you have given permission.
The National Health Service (NHS) maintains routine medical and other health-related records on all patients accessing health services as a matter of course. While we can learn about people’s lives, well-being, experiences, and behaviour by asking direct questions, it can sometimes be easier to obtain some of this information from administrative health records. NHS health records also help us to keep in touch with you and keep our records up to date.
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What information would be added?
The information to be added is collected for administrative purposes by the NHS and held within statistical health databases by NHS Digital, the Departments of Health, the General Register Offices, the Office for National Statistics, and National Records Scotland. Some of this information is linked across central UK NHS and registration bodies.
The information may include, for instance:
- Admissions or attendances at hospital (including dates of admission, discharge or attendance, diagnoses received, treatments and surgical procedures, waiting times).
- Primary care records (including doctor and nurse consultations, diagnoses received, treatments given, referrals made).
- Data from prescribing information systems (prescriptions).
- Records of specific conditions such as cancer or diabetes (including type of condition).
- Health registration details (including name of the Health Authority registered with, NHS numbers, and if a person who took part in the study were to have passed away, the date and cause of death).
- Information on COVID-19 infection notification and test results.
Who will use it?
Like your survey responses, health information would be used by academic and social policy researchers for non-commercial statistical analysis. It will not be used for sales or marketing research. Any sensitive information about specific health conditions or treatments would only be made available to them under restricted access arrangements, which make sure that the information is used responsibly and safely. Names, addresses and NHS numbers are strictly confidential and are never included in the linked dataset. No individual can be identified from research findings.
On the same basis as above, your linked health data would also be made available to authorised researchers within a secure environment as part of the UK Longitudinal Linkage Collaboration (UK LLC). The UK LLC maintains a Data User Register, which gives information on every application they receive to access data held within the UK LLC Trusted Research Environment. You can find the register on the UK LLC website.
My permission – what does it cover?
Information can only be released with your permission. To make the link between your health records and your survey responses we would need to pass on some personal details such as your name, date of birth and address to the NHS, government departments and other related agencies holding the information.
These personal details will only be used to identify your information. Before any information you have authorised is shared for the purposes of linking, your name and other details will be removed. None of your survey answers will be shared with these government departments and agencies and your current or future dealings with any of the departments or agencies will not be affected.
Like the answers you give us in the survey, the additional health information will be completely confidential in accordance with the Data Protection Act.
How long does my consent last?
We would like to add information relating to your present, past and future circumstances. We are not putting an expiry date to this consent as we don’t know exactly when the linkage will take place.
We will remind you regularly of the permissions you have given, and you are free to withdraw your consent at any time. If you do chose to withdraw your consent we will no longer link your records to your survey responses going forward. However, we will retain data which has been previously linked if you have given us permission.
What about data security?
Your name, address and other personally identifying information such as your NHS number will always be strictly confidential. Your health records and your survey answers will only be used for research and statistics. We are very security conscious and all of our systems are password protected and your personal details can only be accessed by a small number of authorised staff.
The information we need to exchange with the government departments and agencies will be sent via secure transfer systems. We follow the most up to date data security protocols and procedures and are compliant with the standards of ISO 27001. Your personal details, such as your name, contact details and date of birth, and NHS number will be secure at all times.
You can read more about data security and confidentiality in our online guide.
Has the study been reviewed and approved by an Ethics Committee?
Yes. In this case, the study has been approved by the NHS Health Research Authority, London – City & East Research Ethics Committee, reference: 21/HRA/0644.
Do I have to let you link my data?
No, linking your health data, like the rest of Understanding Society, is completely voluntary.
What if I change my mind?
You may withdraw permission for your health data to be linked at any time, in which case no further links between your answers and your health records would be made. However, the health records that have already been linked in up to that date will be kept and used for research and statistical purposes only.
If you wish to withdraw your permission, please contact the study at: FREEPOST RRXX-KEKJ-JGKS, Understanding Society, University of Essex, Wivenhoe Park, Colchester, CO4 3SQ. Please sign and date your letter.
The UK Longitudinal Linkage Collaboration (UK LLC)
Understanding Society is a partner in the UK Longitudinal Linkage Collaboration. It was created in 2019 as a research resource during the COVID-19 pandemic. It is run by teams of staff based at the Universities of Bristol and Edinburgh, with IT experts from the University of Swansea, environmental science experts at the University of Leicester, the NHS and the Office for National Statistics. The UK LLC involves members of the public across its governance who provide a supportive and influential role.
Linking data in this central way is good for science, as researchers can access linked data from many different UK population studies in one place. The UK LLC have now received further funding from UK Research and Innovation, the Economic and Social Research Council and the Medical Research Council to continue to provide linked data for research.
Read the UK LLC information for study participants on their website.
What does the UK LLC do?
UK LLC makes data available, within its Trusted Research Environment, for any public good research. Where participant agreement is in place, study data is linked with administrative data, such as health, education, employment, tax or benefits records.
It enhances researchers’ ability to address important issues that affect people’s health and wellbeing. For example, they can examine how health and mental health conditions affect care provision among different groups, identify factors that can be modified to reduce risk, and understand the social impact of childhood adversity on adult health.
This video gives an overview of how the UK LLC works.
How does Understanding Society share data with the UK LLC?
Understanding Society provide the UK LLC with an anonymised copy of your data. To establish the linkage to health and wellbeing and other records we provide a list of your personal identifiers only (e.g. name, NHS ID, address) to the UK LLC. Only a small number of staff from the Universities of Bristol and Swansea can access the linked data.
Data from the studies taking part is anonymised before going into the UK LLC Trusted Research Environment. The data available to researchers in the Trusted Research Environment does not identify any individual, as details such as name and address have been removed and other potentially identifiable information (such as job title) changed so it is less specific. In addition for health data, the UK LLC links to data about the place where study participants live to provide further context for research, for example air pollution data or access to broadband, but does not share participants’ address or postcode information.
The data is stored on secure servers controlled by the University of Bristol (who are the Data Controller), the servers are located and run by the University of Swansea (who are the Data Processor for the University of Bristol). Understanding Society remains the Data Controller for your data. At all times, we will determine whose records should be used in the UK LLC, which linkages can be established and which research teams can use your data and for which purposes. In this way, we make sure that all the principles of Understanding Society are upheld.
What if I have concerns?
If you have any concerns about any aspect of the study, or you have a complaint, in the first instance please contact us on Freephone 0800 252 853 or by email contact@understandingsociety.ac.uk. They will pass the information onto the principal investigator of the project, Professor Michaela Benzeval.
If are still concerned, or if you think your complaint has not been addressed to your satisfaction, or you feel that you cannot approach the principal investigator, please contact the departmental Director of Research in the department responsible for this project, Professor Paul Clarke, pclarke@essex.ac.uk.
If you are still not satisfied, please contact the University’s Research Governance and Planning Manager , Mantalena Sotiriadou, ms21994@essex.ac.uk.
Privacy Notice
Who is undertaking this project?
The research project is being undertaken by a research team based in the Institute of Social and Economic Research (ISER) within the University of Essex
Institute of Social and Economic Research,
University of Essex,
Wivenhoe Park,
Colchester,
Essex
CO4 3SQ
Web: https://www.iser.essex.ac.uk
The University of Essex is registered as a data controller with the Information Commissioner’s Office (Registration Number: Z699129X).
The Data Protection Officer for the University of Essex is;
Information Assurance Manager
University of Essex
Wivenhoe Park
Colchester
CO3 4SQ
+44 (0) 1206 874853
dpo@essex.ac.uk
Data collection for the project has been sub-contracted to Verian, the National Centre for Social Research (NatCen), and Ipsos MORI, who are acting as the data processors.
The research is funded by the Economic and Social Research Council (ESRC).
What is the legal basis under which data is processed within this project?
Under the General Data Protection Regulation (GDPR), a legal basis is required for processing of personal data. The legal basis under which data is processed within this project is:
- Article 6 (1) (e) – “processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;”
Processing of data concerning ‘special categories’ of data require the fulfilment of an additional condition under GDPR. The specific condition fulfilled by the processing of such data within this project is:
- Article 9 (2) (j) – “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.”
For further information, see: https://ico.org.uk/for-organisations/uk-gdpr-guidance-and-resources/lawful-basis/a-guide-to-lawful-basis/
Under the Data Protection Act 2018 we are also required to identify an appropriate condition for processing Special Category Data, and this is Schedule 1, part 1, paragraph 4
What categories of data will be obtained for this project?
The project will collect data from sample members. This will include personal data, such as name, address, date of birth, contact details. The information will also include ‘special category’ data: we ask participants about their health. If participants choose to supply this information, it is processed along with other data. Personal data such as contact details are kept securely separate from survey responses, and are not deposited with the UK Data Archive, nor are they made available to researchers.
Can I opt-out of the use of my data by the project?
Yes, up until the point when the data are released to the UK Data Archive, sample members may request that their data are removed. We can remove any data they have given us which has not yet been deposited with the UK Data Archive, but we are not able to remove data which has already been made available to researchers.
What are my rights in relation to the data?
The General Data Protection Regulation provides the following rights for individuals in relation to their personal data:
- The right to be informed
- The right of access
- The right of rectification
- The right to erasure
- The right to restrict processing
- The right to data portability
- The right to object
- Rights in relation to automated decision making and profiling
For further information, see: https://ico.org.uk/for-organisations/uk-gdpr-guidance-and-resources/individual-rights/individual-rights/.
Will my data be transferred to any organisations outside of the University of Essex?
Anonymised survey data will be transferred to the UK Data Archive, the UK LLC and other approved secure data repositories and made available to registered researchers. Sample data (including contact information) will be transferred to the fieldwork agencies sub-contracted to carry out the data collection, to enable them to contact the sample member to invite them to participate.
How long will my data be retained by the project?
Data will be retained by the Institute for Social and Economic Research for as long as it may be required. The anonymised survey data will be made available to registered researchers from the UK Data Archive and other approved secure data repositories.