Who collects data on ELSA?
ELSA is a collaboration led by University College London involving NatCen Social Research, Institute for Fiscal Studies, University of Manchester and University of East Anglia. Together these five organisations form the ELSA Management Team, and act as joint data controllers for ELSA, making decisions about the data collection on the survey.
NatCen are responsible for collecting the data on ELSA, through interviews, paper and online questionnaires, measures taken by nurses and linking survey data to additional administrative sources. NatCen also act as the data processor on ELSA, processing the data collected so that it can be used for research, while ensuring that it will not be possible to identify any participants in the data.
ELSA helps to build a picture of ageing in England, and the data we collect is used for statistical and research purposes only. All the information we collect is held in accordance with current data protection legislation.
Under this legislation (Article 6), we process your information on the basis of ‘legitimate interest’ because our research aims to help people in government, charities, academics and other influential people, when thinking about planning services which affect people aged 50 and over. So that’s things like work, pensions and healthcare which could affect you and your family. Additionally, the lawful basis for processing special category linked health data (Article 9) is ‘scientific research purposes’.
What will happen to any information I give?
We will treat your information in the strictest confidence under current data protection legislation. The results are used for research and statistical purposes only. All survey findings are anonymised, which means that it will not be possible to identify any participants from the published results.
Your anonymised information is combined with the tens of thousands of survey answers from other ELSA participants and is securely deposited in the UK Data Archive, which is based at the University of Essex and operates under a strict licence agreement. Researchers can register with the UK Data Archive to access ELSA data, which can only be used for genuine research for public interest and never for commercial gain.
Occasionally, we share anonymised data directly with bona fide researchers in other organisations. This includes universities in the UK, EU, USA and Australia, and public bodies such as the NHS and Public Health England (PHE).
The information we deposit in the UK Data Archive or share with bona fide researchers, does not contain names, addresses, phone numbers, email addresses or other information which can identify you. As we would like to look at long term trends, we have not set a limit on how long we would like to keep the information you give.
What will happen to the information ELSA has collected from me in response to the COVID-19 pandemic?
ELSA is one of many UK longitudinal research studies contributing to the Longitudinal Health & Wellbeing National Core Study for COVID-19 research. This has been designed by the UK’s top scientists to allow longitudinal studies – such as ELSA - to fully contribute to the national research programme and policy development. To do this, many studies need to put their COVID-19 relevant data into a single secure research environment to build scale and numbers across diverse population groups, occupations and other factors associated with COVID-19 risk, and from all over the UK. It is also necessary to link these participants to their health and wellbeing administrative and environmental records to follow changes in status (e.g. who has had COVID-19, who has been vaccinated during the pandemic).
This research programme looks at the big picture which includes COVID-19 itself, but also the impact that lockdown and other restrictions have had on wider health (such as mental health, or cancer care and other ongoing health needs), education and families. For those of you who have taken part in the ZOE Symptom Study (https://covid.joinzoe.com/data) it will also be useful to link to those records to get a detailed record of symptoms and the impact of COVID-19, this may help us understand outcomes such as Long COVID.
To achieve this, the Longitudinal Health & Wellbeing National Core Study is establishing the UK Longitudinal Linkage Collaboration (UK LLC). This is a secure research server, run by the University of Bristol (Data Controller) and supported by the University of Swansea (Data Processor for the University of Bristol). ELSA will provide the UK LLC with de-identified copies of your data – including data collected during the pandemic, but also relevant data collected before the pandemic so we can look at how health and other factors have changed. To establish the linkage to health and wellbeing and other records we will provide a list of your personal identifiers only (e.g. name, NHS ID, address) to the NHS Wales Informatics Service (they will never see your study data). This NHS organisation will send identifiers to the groups conducting the linkages:
The UK NHS authorities who share records with researchers (including NHS Digital in England, Public Health Scotland/eDRIS/National Records of Scotland in Scotland, SAIL databank in Wales, NHS Northern Ireland Business Development Organisation in Northern Ireland);
The UK statistical agencies (including the Office for National Statistics in England and Wales, eDRIS/National Records of Scotland in Scotland, Northern Ireland Statistics & Research Agency in NI);
The University of Leicester will receive address data only in order to link this to a precise location and then map information about this place (such as air pollution, noise data, services and the amount of greenspace around the property).
The data is stored on secure servers controlled by the University of Bristol (the servers are located and run by the University of Swansea). The UK LLC will make available a full list of researchers using the UK LLC data and the purpose for this, which can be obtained by emailing email@example.com. The UK Data Protection Act 2018 provides individuals with rights over how their data are used. The UK LLC supports these rights.
The ELSA Management Team 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 ELSA are upheld.
How do we look after your data?
Your data are stored securely by the team who administer and process the results of the survey at NatCen. All data you provide to us are stored on our secure servers, in line with international best practice and NatCen’s ISO27001, ISO 20252 and Cyber Essentials Plus certifications. We have a comprehensive set of policies and procedures to prevent unauthorised access which apply to all parts of NatCen, and alongside our ongoing programme of internal audits we undergo formal external audits every 6 months to ensure we continue to meet all the requirements of ISO27001 and other international best practices.
Your name and contact details will never be passed on to anyone else without your permission, with the exception of the following security-checked organisations directly working with us to administer the survey: the printers (who print the letters we send to you), and the lab analysing blood samples (who receive your date of birth and gender alongside the samples to ensure the data is aligned to the correct record). Both organisations are from NatCen’s Approved Supplier List and have been vetted by us, with signed contracts and agreements (refreshed every 12 months), to ensure that strict data security arrangements are followed.
We ask you separately for your permission to send your personal details to link ELSA survey data to administrative health or economic data sources, and to send your nurse visit results to your GP.
Can I ask you to delete or change my data?
Yes. You have the right to request access to your data, to amend them if they are incorrect, or that your data are deleted (if still in raw form). Participation in this research is voluntary and you have the right to withdraw at any stage by contacting NatCen on firstname.lastname@example.org or Freephone 0800 652 4574.
If you have a complaint, please get in touch by contacting NatCen on email@example.com or Freephone 0800 652 4574.You also have the right to lodge a complaint with the Information Commissioner’s Office at: Information Commissioner's Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF, telephone 0303 123 1113, https://ico.org.uk/concerns.