Who collects data on ELSA?
ELSA is a collaboration between NatCen, University College London, Institute for Fiscal Studies and University of Manchester. Together these four organisations form the ELSA Research Team, and act as joint data controllers for ELSA, making decisions about the data collection on the survey.
NatCen Social Research 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 personal details are held by and stored securely by the team who administer and process the results of the survey at NatCen. All information you provide to us is 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 Social Research, 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 details will never be passed on to anyone else without your permission, with the exception of two 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. Read more about ELSA data linkage.
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.
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.
If you have a complaint, please get in touch by contacting NatCen on firstname.lastname@example.org 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.