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How we use your information
This privacy notice tells you what to expect when MRC Unit for Lifelong Health and Ageing at UCL (LHA) collect information from you because you are taking part in our studies. LHA runs the MRC National Survey of Health and Development (NSHD), Southall and Brent Revisited (SABRE) and LINKAGE-Camden. Unless otherwise stated, the information in this notice applies to all three studies.
LHA is part of the University College London (UCL). UCL determines the ways in which any information which can personally identify you (your personal data) is held and used (UCL are the Data Controller). The Director of the LHA is responsible for overseeing the way in which the study team looks after your data on a day to day basis (the Director of the LHA is the Data Custodian).
This privacy notice applies to information you give us:
- phoning or emailing
- visiting our website
- updating your contact details via our website (NSHD only)
It applies to information we receive from other sources:
- returning completed questionnaires, consent forms, reply slips or other written information
- collecting data from routine official records (for example NHS)
- collecting data from GPs
It also applies to the way we handle, process and store your information in:
- sending mail and email
- storing questionnaires and consent forms
- finding participants who we lose contact with
- providing your research data for use in scientific research
We also provide you with further information on your privacy, confidentiality and anonymity in other parts of our website, and in the information we send you via post when we ask you to take part in home visits, clinics or questionnaires.
- Iron Mountain (long term storage of paper questionnaires)
- Abacus (scanning of paper documents such as consent forms and birthday card reply slips)
- NSHD - https://www.nshd.mrc.ac.uk/data/
- SABRE - We may share SABRE study data with other research groups in the future, in order to carry out new analyses which could contribute to our research study aims. We will only release SABRE study data that is fully anonymised to other groups, meaning that a new study number will be generated for each person and identifiable information, such as date of birth or dates of events such as illness, will be removed and replaced with year of birth or year of event. Your name and address will never be released to any other research group.
- give you a description of it tell you why we are holding it tell you who it could be disclosed to, and let you have a copy of the information in an intelligible form.
- Our commitment to you
Taking part in our studies is voluntary and you are free to withdraw at any time without giving a reason.
You will not be identified from the research – researchers do not see your name with your information – they only see an ID number. Every research project is checked to make sure it meets the highest scientific and ethical standards. In the same way as a doctor who treats you is bound to keep your information confidential, the LHA, and all the researchers we work with are required to sign confidentiality agreements which state they will keep your information confidential and they also attend annual data training.
We do not conduct research with the aim of commercial gain - all our research aims to benefit society and is not for profit.
The projects within the LHA are interested in long term changes within health. As the projects are still in the process of collecting data, we have not set a time limit for how long we will keep your data. This applies to both data collected as part of data collections (questionnaires, home visits, clinic visits) and any information provided by data linkage. We do however review what we keep on a 5-yearly basis.
- Changing your mind
If you wish to change the way you take part in our studies – or stop participating – in any of the projects run by the LHA you can do so at any time. More information on withdrawing from the study is available at:
- Phoning or emailing
When you phone, email or text us we will verify your identity and ensure that you are a taking part on one of our studies before proceeding.
NSHD and SABRE
Any information you give us during a phone call, including time and dates, may be recorded on contact sheets and kept in a secure filling cabinet. Once the action associated with the call has been finalised, the sheet will either be confidentially destroyed or filed for future reference. Our contact management system is held within UCL secure servers. The University’s email provider is Microsoft (Outlook). This notice is separate to, but supported by, the UCL’s privacy policy on email available at https://www.ucl.ac.uk/informationsecurity/policy/public-policy/policy-on-electronic-mail.pdf
- Updating your contact details via our website – NSHD only
When you update your contact details via our website, the data is stored on a UCL secure server. The NSHD Study Team will then update your contact details on our contact management system. No information will be stored online.
If we do need to collect personally identifiable information through our website (for example using the NSHD contact details update form), we will make it clear why we need to collect this information and explain what we intend to do with it.
- Returning completed questionnaires, consent forms, reply slips or other written information
When you return an item to us in writing (for example a questionnaire, consent form, reply slip or written letter) we will treat this information as confidential. It will be stored in a secure location and if scanned, will be kept on a secure server. Your personal details will be kept separately from your research data. We will not pass your personal details to third parties without your consent except under the circumstances described below.
- How we will use your personal details
We will keep your personal details confidential, and separate from your research data. Your personal details will not be shared with third parties except for certain service providers working on our behalf.
These third parties include:
NSHD
- Iron Mountain (long term storage of paper questionnaires)
- Abacus (scanning of paper documents such as consent forms and birthday card reply slips)
Some research projects need information based on locations - such as where you live. We use addresses and postcodes to produce new information - such as levels of air pollution near your home - which we then give to researchers. The information we provide to these researchers does not include your address.
We will only share your personal details with these third parties under strict conditions set out in a legally binding data processing contract. This offers assurances about the use, access and security of any personal data provided to the third party and prevents them passing on or selling your personal data. We also use Royal Mail for posting questionnaires, sending invitations to take part in other face-to-face data collections (e.g. home visits, clinics or focus groups) and other correspondence associated with keeping in touch with you.
- How we will use your research data
We will only ever collect your data with permission, for example by asking you to attend a clinic or complete a questionnaire. Once we have collected it, it will be processed for research use, all personal information (name, address, date of birth) is removed and will be stored securely and confidentially using a unique ID. We will then provide this information to researchers on request and only under strict conditions. This process is described in detail in:
- NSHD - https://www.nshd.mrc.ac.uk/data/
- SABRE - We may share SABRE study data with other research groups in the future, in order to carry out new analyses which could contribute to our research study aims. We will only release SABRE study data that is fully anonymised to other groups, meaning that a new study number will be generated for each person and identifiable information, such as date of birth or dates of events such as illness, will be removed and replaced with year of birth or year of event. Your name and address will never be released to any other research group.
Location. We use addresses and postcodes to produce new information about your location (geographic data). Before this information is handed to researchers, we check the risk that it can identify you. Any potentially identifiable geographic data is only made available at the LHA offices. We do share some geographic data with researchers outside the LHA but this will only identify you as living in one of 12 standard regions in the UK.
Some research projects will require access to some of the sensitive information that has been collected with your consent:
Data such as mortality, cancers and rare diseases have the potential to be identifiable. Subject to data sharing approval, researchers may be allowed to use grouped or ‘aggregated’ data. Grouping data minimises the risk of re-identification. Currently, data can only be accessed from the LHA offices.
- Transfer of information outside of Europe
There are common standards for the protection of personal data throughout the European Economic Area (EEA) and as such the LHA can share research data within the EEA. Any LHA data which is transferred to another EEA country will held and used to the same standards and same protections as they would in the UK.
When a researcher asks us to send data outside the EEA, the LHA checks if the researcher will be working in a country offering the same level of protection for personal data as we have in the UK. https://ec.europa.eu/info/law/law-topic/data-protection_en
If the country is not on the list, the LHA will either:
- allow the researcher to use a virtual private network to access the data for their research. This means the data does not leave the UCL secure servers, but the researcher can carry out their analysis.
- conduct the analysis in-house, so only the final results leave the UK.
- reject the application
- Access to personal information
LHA aims to be as open as we can in terms of giving you access to your information. You can find out if we hold any personal information by making a ‘data subject access request’ under the Data Protection Act 2018. If we hold information about you, we will:
- give you a description of it
- tell you why we are holding it
- tell you who it could be disclosed to,
- and let you have a copy of the information in an intelligible form.
To make a request, you need to put this in writing and address to:
- NSHD: Freepost RSAB-CCGC-JCSL, MRC National Survey of Health and Development, MRC Unit for Lifelong Health and Ageing at UCL, 33 Bedford Place, London, WC1B 5JU.
- SABRE: SABRE Study, UCL Institute of Cardiovascular Science, Roger Williams Building, 69-75 Chenies Mews, London WC1E 6HX
If you agree, we will try to deal with your request informally, for example sending a letter with the requested information. If we do hold any personal information about you, you can ask us to correct any mistakes.
NSHD study participants only - We have the right to refuse a data subject access request if the personal information we hold about you was not provided by you (e.g. the data was provided by your mother, father, doctor or teachers), and the Data Custodian believes the information would cause you distress.
- Complaints or queries
The LHA aims to meet the highest standards when collecting and using personally identifiable information. We encourage people to tell us if they think that our collection or use of information is unfair, misleading or inappropriate. We would also welcome any suggestions for improving the way we handle your personal details.
This privacy notice is intended to be brief and clear and does not cover every possible way that we handle your personal details in complete detail. However, we are happy to provide further information on request.
- Changes to this privacy notice
We keep our privacy notice under regular review. This privacy notice will be reviewed annually.
- How to contact us
If you want to request information about our privacy policy you can contact us via the details on our website. Further information is also available in the UCL’s Information Security Policy, available at https://www.ucl.ac.uk/informationsecurity/policy.
- About this privacy notice
This is version: Version 1 21/05/2018.