Millennium Cohort Study (also known as Child of the New Century) - Tracing

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Objective for processing

[1 paragraph unchanged] MCS is following the lives of around 19,000 young people born across [26 words unchanged] Kingdom in the 21st Century. Since the study’s launch there have been seven eight attempts to re-contact and gather information from the whole cohort (at ages 9 months, 3 years, 5 years, 7 years, 11 years, 14 years, 17 years and 17 22 years). The MCS covers such diverse topics as parenting; childcare; schooling and [24 words unchanged] poverty; housing, neighbourhood, and residential mobility; and social capital, ethnicity and identity. [1 paragraph unchanged] CLS has appointed an external supplier agency (Ipsos) to carry out the next survey interviews for age 22 which is currently planned to take place . The survey began in 2023. September 2023 and data collection completed in January 2025. Formara are a processor acting under the instruction of UCL. Formara have been contracted to send mailing to participants on behalf of CLS. [7 paragraphs unchanged] The lawful UCL's legal basis for processing (acquiring, linking and sharing) personal data is for a public task under the UK GDPR is Article 6(1)(e) - i.e. processing is necessary for the performance of a task carried out in the public interest or (as is made explicit to participants in the exercise information leaflets provided). UCL also process special categories of official authority vested personal data for research under GDPR Article 9(2)(j) i.e. processing is necessary for archiving purposes in the controller; public interest, scientific or historical research purposes or statistical purposes. In addition, for ethical reasons and under The lawful basis for processing special category data under UK GDPR 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. the Common Law Duty of Confidentiality, UCL sought permission from the Confidentiality Advisory Group to access this data without consent. CLS has also received Research Ethical Committee (REC) approval for tracing participants via NHS England. The Economic and Social Research Council (ESRC) are the funder for this study. Research using the data from this study will contribute to a body of evidence which have the potential to inform government and result in policy change in various areas including health. As a result, this has the potential to benefit the public in general. Amazon Web Services (AWS) is a processor acting under the instructions of UCL. AWS’ role is limited to secure backup of data stored in UCL’s Data Safe Haven. The Economic and Social Research Council (ESRC) are the funder for this study. No data received under this agreement will be shared with the funder. UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data. Ipsos is a processor acting under the instructions of UCL. Ipsos' role is limited to conducting interviews with MCS participants. Data will be accessed by: - Substantive employees of UCL - Ipsos interviewers

Processing activities

CLS is contracting Formara Ltd to send general mailing to CLS participants. These involve mailings on the occasion of their birthday, where CLS may send participants birthday cards, invitations to activities organised by the study as well as invitation to participate in the next sweep of data collection, etc. For this purpose CLS will share the cohort members' personal information with Formara, (name, address) these may contain some of the addresses provided by NHS England to CLS. Formara will delete all information after the activity has been completed. [1 paragraph unchanged] NHS England will provide the relevant records from the Demographics dataset to CLS. The data will contain directly identifying data items such as Address’, addresses, postcodes, NHS Number, DOB, DOB etc. CLS sends will share a ‘sample’ file to with the fieldwork agency Ipsos via the UCL Data Safe Haven file transfer [11 words unchanged] members who are to be invited to take part in the interview. [2 paragraphs unchanged] The data can be accessed by authorised CLS personnel via remote access on UCL-issued devices from their work organisation office or from home. The data will always remain on the servers at UCL CLS. Personnel are prohibited from downloading or copying data to local devices. UCL uses offsite back-up services provided by VIRTUS Data Centres. The data will not leave the UK. UCL stores data on the Cloud provided by Amazon Web Services. Access is restricted to employees of UCL or Ipsos who have authorisation from the principal investigator of the MCS study. The data file supplied by NHS England will be processed within CLS and entered into CLS’s secure confidential address database. The data will remain in the DSH at all times. Access is restricted to employees or agents of UCL, Ipsos and Formara The data will not be linked with any other data. However, it will be compared with existing MCS data. If cohort members confirm their address this will be recorded on the CLS database as a confirmed address. If theletter is ‘returned to sender’ this will also be recorded on the CLS database. There will also be cases where no confirmation is received and their letter is not returned to sender. [1 paragraph unchanged] Amazon Web Services (AWS) is a processor acting under the instructions of UCL. AWS’ role is limited to secure backup of data stored in UCL’s Data Safe Haven. UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data. Ipsos is a processor acting under the instructions of UCL. Ipsos' role is limited to conducting interviews with MCS participants. Data will be accessed by: - Substantive employees of UCL - Ipsos interviewers -Formara employees All personnel accessing the data have been appropriately trained in data protection and confidentiality. The Data will be accessed by authorised personnel via remote access. The Controller(s) must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract. For remote access: - Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA; - Access controls granting users the minimum level of access required are in place; - Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data; - Multifactor authentication (MFA) is required for remote access; - Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access; - All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy. The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose). The data will always remain on the servers at UCL CLS. Personnel are prohibited from downloading or copying data to local devices. Staff using the DSH complete annual training and regularly review data access arrangements ensuring data are only limited to those authorised to access it. Remote processing will be from secure locations within the UK. The data will not leave the UK at any time. At UCL, the NHS England data will be held at the secure server in the UCL Data Safe Haven (DSH). The UCL DSH is certified to ISO 27001:2013 and is compliant with NHS England's Data Security and Protection Toolkit. Staff using the DSH complete annual training and regularly review data access arrangements ensuring data are only limited to those authorised to access it. UCL Computing Regulations are based on the premise that access to resources are generally forbidden unless expressly permitted. All data transfers from the DSH require approval and are carried out through secure portals which are fully audited. Access to the UCL DSH is via remote desktop and requires multi-factor authentication. In addition to a strong password each user has to use a six-digit number generated by a smartphone app or physical token at each login. Passwords must be changed at regular intervals, and unused accounts are automatically disabled after a fixed period. Once inside the environment, robust access control ensures that researchers can only examine information that they are approved to use.

Expected output

The addresses previously obtained from NHS England, for other studies, were used to invite study members to take part and re-engage with the studies study and will be used for this study to invite participants to take part in the upcoming age 22 survey. Using addresses provided by the NHS England helped CLS with getting [7 words unchanged] would otherwise not be able to take part in a new survey. The main outcome for the study is the next sweep, MCS age 22, provisionally planned to take place in 2023, which will be a fully documented, anonymised research dataset and this will be archived with the UK Data Service (early 2026) to provide a strategically important resource for UK Social Science, including researchers in health and social care. The scientific priorities and questionnaire content of the next sweep (age 22) will be is elaborated and developed in consultation with the academic and policy community with [160 words unchanged] major themes which CLS intend to cover at the next sweep collection at age 22 which will certainly include health themes such as Mental health and wellbeing, [17 words unchanged] including weight, substance use, sleep, diet and exercise will also be included. [3 paragraphs unchanged]

Expected measurable benefits

The continuing success of the study will be underpinned by CLS maintaining an up to date contact details database for its participants. Submitting the cohort for up-to-date contact details and being able to keep the information for future sweeps, will allow the researchers to re-contact the participants who CLS have lost touch with and give them the opportunity to re-engage or clearly state that they wish to withdraw. It will also ensure that literature goes to the correct name and address and reduces the risk of correspondence being sent to deceased participants and causing potential distress to live relatives. The information collected during the Age 22 Survey and in future sweeps may enable researchers to uncover life course and intergenerational factors which contribute to health among this generation, and thus to inform the development of preventative health policies across the whole of life that will expand healthy life expectancy, and reduce the burden of ill-health and disease at older ages. [18 paragraphs unchanged]

Benefits reported

The Age 22 survey is still under development. The data received under this agreement has not been used yet. CLS expects to use the data to invite participants to take part in the new survey. CLS have used the addresses received to invite participants to the current sweep of data collection. At this stage it is not possible yet to know how many addresses provided by NHS England resulted in a successful contact. CLS will receive this information from Ipsos on completion of the survey.

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Objective for processing

The Centre for Longitudinal Studies (CLS) at University College London (UCL) is an academic resource centre responsible for producing and disseminating data resources for the scientific community. It is responsible for four of Britain's internationally renowned longitudinal cohort studies, the 1958 National Child Development Study, the 1970 British Cohort Study, the Next Steps, and the Millennium Cohort Study (MCS). All these studies are following the groups of participants from cradle to grave. As such, this group of studies is unique and has, and still is, providing a wealth of information used in the policy decisions affecting society's health and well-being. The Centre for Longitudinal Studies (CLS) at University College London (UCL) requires access to NHS England data for the purpose of the Millennium Cohort Study (MCS) also known as the ‘Child of the New Century’. The purpose of this application covers: Update CLS' database with new addresses and deaths - CLS is requesting up to date addresses for the MCS cohort members. The new addresses will be used to invite participants to take part in the upcoming survey. Date of Death is requested to ensure that ‘untraced’ cohort members are not contacted if they have died (although deaths are provided under agreement DARS-NIC-147860-0RSHN-v1.3 they would be disseminated at a different time to the new addresses and deaths under this application.) MCS is following the lives of around 19,000 young people born across England, Scotland, Wales and Northern Ireland in 2000-02. MCS is renowned worldwide for the evidence it provides on children’s experience of growing up in the United Kingdom in the 21st Century. Since the study’s launch there have been seven attempts to re-contact and gather information from the whole cohort (at ages 9 months, 3 years, 5 years, 7 years, 11 years, 14 years and 17 years). The MCS covers such diverse topics as parenting; childcare; schooling and education (e.g academic qualifications, vocational qualifications); daily activities and behaviour; cognitive development; child and parent mental and physical health; employment and education; income and poverty; housing, neighbourhood, and residential mobility; and social capital, ethnicity and identity. The Millennium Cohort Study (MCS), also known as the ‘Child of the New Century’ to cohort members and their families, is following the lives of around 19000 young people born across England, Scotland, Wales and Northern Ireland in 2000-02. Each year CLS sends an annual postal mailing to all MCS participants. CLS asks that participants complete a reply slip which is returned to CLS which allows participants to provide CLS with any change in their details e.g., a new email address, phone number, etc. CLS also ask them to return the reply slip even if none of their details have changed i.e., seeking a positive confirmation that that is the address CLS hold for them. As a result CLS, can maintain the cohorts' latest details on the MCS database. In the event of the annual mailing not reaching the participant it is returned to CLS as a 'return to sender'. CLS will attempt to trace all these returns but if CLS cannot locate the participants then they are flagged on the database as a 'gone-away'. NHS England may potentially hold a more recent address and provide CLS with an opportunity to invite the cohort to re-join the study. MCS is renowned worldwide for the evidence it provides on children’s experience of growing up in the United Kingdom in the 21st Century. Since the study’s launch there have been seven attempts to re-contact and gather information from the whole cohort (at ages 9 months, 3 years, 5 years, 7 years, 11 years, 14 years and 17 years). The MCS covers such diverse topics as parenting; childcare; schooling and education (e.g academic qualifications, vocational qualifications); daily activities and behaviour; cognitive development; child and parent mental and physical health; employment and education; income and poverty; housing, neighbourhood, and residential mobility; and social capital, ethnicity and identity. The information collected in previous sweeps of the study has formed the high-quality data resource, that is MCS, for scientific investigation across the life course and domains. The seventh, Age 17 survey (2018-19) added to the data already collected in previous sweeps by updating information on current circumstances of the cohort and experiences they have had since the last sweep. In previous sweeps, schooling will have been the main activity common to the vast majority of cohort members. CLS has appointed an external supplier agency (Ipsos) to carry out the next survey interviews for age 22 which is currently planned to take place in 2023. The Age 17 survey marked an important transitional time in the cohort members’ lives, where educational and occupational paths can diverge significantly. It is also an important age in data collection terms since it may be the last sweep at which parents are interviewed and it is an age when direct engagement with the cohort members themselves rather than their families is crucial to the long-term viability of the study. To reflect this, CLS conducted face to face interviews with the cohort members for the first time. Cohort members were also asked to do a range of other activities including filling in a self-completion questionnaire on the interviewer’s tablet, completing a cognitive assessment (number activity) and having their height weight and body fat measurements taken. The following NHS England data will be accessed: This was a unique opportunity to measure factors that underlie different types of transition into adult life, which may affect future wellbeing in unprecedented ways. Capturing these transitions well, alongside the contemporary factors underlying them was critical. It was important to build up a picture of daily life, including factors such as: relationship with parents, family and peers, risky behaviours, social media engagement and efforts on activities such as education /school. Additional factors affecting decisions at this age include attitudes and preferences, such as preferences for education, attitudes to risk, willingness to trade off resources at different points in time, and expectations about future life events. Measuring social and emotional development, mental health and cognitive development and using well-validated instruments, was also a critical component of the survey. - Demographics data, is necessary because the study depends on maintaining contact with as large a number of study members as possible. Therefore, CLS is seeking permission to be supplied with updated addresses of MCS Cohort members. All these individuals have made an informed decision to participate in the study over the years and have been made aware that the study is seeking to follow them throughout their lives. Of the approximately 19,000 individuals that have ever participated in the study there will always be a number of individuals for whom the Centre for Longitudinal Studies (CLS) at University College London will not have confirmed addresses at the time of carrying out the next survey. The level of data will be : The ongoing success of the study depends on maintaining contact with as large a number of study members as possible. Therefore, CLS are seeking permission to be supplied with updated addresses for MCS cohort members. All of these individuals have made an informed decision to participate in the study over the years and have been made aware that the study is seeking to follow them throughout their lives. This information is provided to participants on the study website, a link is provided at website CNC | FAQs (childnc.net), under ‘How we find you’. CLS provide a link to the information on the study website in all materials provided to cohort members. Cohort members receive an advance booklet with complete information about each upcoming survey. - Identifiable necessary because participants' addresses are required for tracing purposes. Each year CLS sends an annual postal mailing to all MCS participants. CLS asks that participants complete a reply slip which is returned to CLS which allows participants to provide CLS with any change in their details e.g., a new email address, phone number, etc. CLS also ask them to return the reply slip even if none of their details have changed i.e., seeking a positive confirmation that that is the address CLS hold for them. As a result CLS, can maintain the cohorts' latest details on the MCS database. In the event of the annual mailing not reaching the participant it is returned to CLS as a 'return to sender'. CLS will attempt to trace all these returns but if CLS cannot locate the participants then they are flagged on the database as a 'gone-away'. NHS Digital may potentially hold a more recent address and provide CLS with an opportunity to invite the cohort to re-join the study. CLS will send the details of approximately 14,100 cohort members to be linked to the NHS Digital Personal Demographics Service (PDS) dataset. This number excludes those who have died and those who have requested to be withdrawn from the study. NHS Digital will supply new addresses for study members who can be matched to the PDS dataset. Any study members for whom CLS successfully received a new address via this route would be written to and asked to provide updated contact details. The data will be minimised as follows: CLS will appoint an external supplier agency (data processor) to carry out the next survey interviews for age 22 which is currently planned to take place in 2023. CLS will also use a Mailing house supplier to send correspondence to participants inviting them to re-engage with the study. CLS intend to share new addresses received from NHS Digital with these organisations in order for them to invite study members to take part in future surveys. Once the agency is appointed, CLS will inform NHS Digital of the new data processors. - Limited to the MCS study cohort identified by UCL (circa 14,100)- Excluding individuals whose deaths have been reported or who have withdrawn from the study. Any study member choosing not to take part in the study are flagged on this CLS database with a code denoting whether their refusal is temporary (i.e. for a particular wave/survey) or permanent (i.e. they wish to have no further involvement in the study). Any previously deposited anonymised survey data for a study member and confidential data from the address database are retained unless the study member specifically asks us not to, in which case this data is securely deleted. University College London (UCL) is the research sponsor and controller as the organisation ensuring the data will only be processed for the purpose described above. With regard to a request for 'withdrawal' from a participant CLS classifies them as a 'withdrawal from the current survey' or a 'withdrawal from the study' and these are handled slightly differently: The lawful basis for processing personal data under the UK GDPR 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; (a) Withdrawal from the current survey: CLS will flag this on its computer system to indicate that the participant will not be taking part in the current survey and the reason for not wanting to take part is also recorded. For example, they may just not have the time to take part. Therefore, there will be no further contact with the participant for the duration of the current survey but they will be invited to take part in the next survey. The lawful basis for processing special category data under UK GDPR 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. (b) Withdrawal from the study: CLS will flag this on its computer system as a permanent refusal to indicate that the participant will not be taking any further part in the study itself and the reason for this type of withdrawal is also recorded for analysis purposes. Therefore there will be no further contact with the participant for the remainder of the longitudinal study. If this request is received in writing then CLS will acknowledge the request and notify the participant that they have been flagged and will no longer be contacted or receive any further communications. This request may sometimes be accompanied by a request for the destruction of their data. University College London (UCL) are the sole Data Controller for this agreement who will also process data. UCL legal basis for processing (acquiring, linking and sharing) personal data is for a public task under GDPR (article 6(1)(e)) i.e. processing is necessary for the performance of a task carried out in the public interest (as is made explicit to participants in the information leaflets provided). UCL also process special categories of personal data for research under GDPR (article 9(2)(j)) i.e. processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes. In addition, for ethical reasons and under the Common Law Duty of Confidentiality, UCL sought permission from the Confidentiality Advisory Group to access this data without consent. CLS has also received Research Ethical Committee (REC) approval for tracing participants via NHS Digital. Participants are aware that the study will attempt to trace them and CLS are confident that many of those newly traced via the NHS will be happy to take part. CLS also uses its own methods for tracing cohort members for example, asking the named stable contacts (relative, neighbour or friend) for the participant’s new address. [1 paragraph unchanged] Amazon Web Services (AWS) is a processor acting under the instructions of UCL. AWS’ role is limited to secure backup of data stored in UCL’s Data Safe Haven. UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data. Ipsos is a processor acting under the instructions of UCL. Ipsos' role is limited to conducting interviews with MCS participants. Data will be accessed by: - Substantive employees of UCL - Ipsos interviewers

Processing activities

All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by "Personnel" (as defined within the Data Sharing Framework Contract i.e.: employees, agents and contractors of the Data Recipient who may have access to that data). CLS will transfer data to NHS England. The data will consist of identifying details specifically NHS number, Date of Birth (DOB), first name, Last Name, Middle name, Gender, Postcode and study ID for the cohort to be linked with NHS England data. The transfer will not contain study members who are deceased or withdrawn from the study. NHS address tracing and matching variables: NHS England will provide the relevant records from the Demographics dataset to CLS. The data will contain directly identifying data items such as Address’, postcodes, NHS Number, DOB, NHS address tracing. CLS wish to use the demographics products to receive new updated address regularly. CLS sends a ‘sample’ file to the fieldwork agency Ipsos via the UCL Data Safe Haven file transfer system, this file contains the latest contact details for all study members who are to be invited to take part in the interview. CLS will supply NHS Digital with a file with study members to match to the NHS data. The file supplied will only contain eligible study members who have participated in at least one wave of MCS. It will not include study members known to have died or to have withdrawn from the study. The file will contain the following data items: On receipt of the sample file, Ipsos will upload the file into their sample management system, the file can be accessed by interviewers during fieldwork via password-protected laptops. Interviewers gain access to the data remotely. Ipsos are contractually obliged to destroy all personal data within 28 days of completion of the project. - CLS identifier The data will be stored on servers at UCL. - First name The data can be accessed by authorised CLS personnel via remote access on UCL-issued devices from their work organisation office or from home. The data will always remain on the servers at UCL CLS. Personnel are prohibited from downloading or copying data to local devices. - Last name The data will not leave the UK. - Middle name (where available), Access is restricted to employees of UCL or Ipsos who have authorisation from the principal investigator of the MCS study. - Date of birth All personnel accessing the data have been appropriately trained in data protection and confidentiality. - Gender - Postcode - NHS Number NHS Digital would supply the following details to CLS: - CLS identifier - NHS number - Data as stated in the Demographics extract. No other data will be linked to the NHS Digital data received. All those accessing the data supplied by NHS Digital are substantive employees of University College London or employees of subcontractor organisations (organisation to be appointed) carrying work on behalf of UCL who have been appropriately trained in data protection and confidentiality. At UCL, the NHS Digital data will be held at the secure server in the UCL Data Safe Haven (DSH) and accessed remotely by CLS staff. The UCL DSH is certified to ISO 27001:2013 and is compliant with NHS Digital’ s Data Security and Protection Toolkit. Staff using the DSH complete annual training and regularly review data access arrangements ensuring data are only limited to those authorised to access it. UCL Computing Regulations are based on the premise that access to resources are generally forbidden unless expressly permitted. All data transfers from the DSH require approval and are carried out through secure portals which are fully audited. Access to the UCL DSH is via remote desktop and requires multi-factor authentication. In addition to a strong password each user has to use a six-digit number generated by a smartphone app or physical token at each login. Passwords must be changed at regular intervals, and unused accounts are automatically disabled after a fixed period. Once inside the environment, robust access control ensures that researchers can only examine information that they are approved to use. The data file supplied by NHS Digital, will be reviewed by CLS. Where addresses supplied by NHS Digital are new or more recent than the address currently held on the CLS confidential database the new addresses will be uploaded. CLS will write to all newly traced cohort members at the addresses that are supplied by NHS Digital and will ask them to confirm their address by return of a reply slip, telephone, email or via our website. For this purpose, CLS will send names and addresses to the mailing house company (to be appointed) so they can send correspondence to cohort members on behalf of CLS. If cohort members confirm their address this will be recorded on CLS' database as a confirmed address. If the letter is ‘returned to sender’ this will be also be recorded on CLS’ database. There will also be cases where no confirmation is received and CLS’ letter is not returned to sender. CLS will use a mailing house organisation (to be appointed) to send correspondence to participants inviting them to re-engage with the study. Furthermore, addresses will be used by CLS to invite study members to take part in the current survey and future surveys. These new/more recent addresses will also be shared with the fieldwork agency (to be appointed) for the purpose of inviting participants to take part in the upcoming survey. Once the mailing organisation is appointed, CLS will submit an amendment to add the new processor to this application. Only after receiving NHS Digital approval of the new processor will CLS share any data with them.

Expected output

Output from the data received from NHS Digital The addresses previously obtained from NHS England, for other studies, were used to invite study members to take part and re-engage with the studies and will be used for this study to invite participants to take part in the upcoming survey. Using addresses provided by the NHS England helped CLS with getting in touch with those cohort members who would otherwise not be able to take part in a new survey. The addresses previously obtained from NHS Digital, for other studies, were used to invite study members to take part and re-engage with the studies and will be used for this study to invite participants to take part in the upcoming survey. Using addresses provided by the NHS Digital helped CLS getting in touch with those cohort members who would otherwise not be able to take part in a new survey. [5 paragraphs unchanged]

Benefits reported

Not stated in the previous version; added here.

The Age 22 survey is still under development. The data received under this agreement has not been used yet. CLS expects to use the data to invite participants to take part in the new survey.

Unchanged: Expected measurable benefits.