FAQs

 

Got questions about the study? Check out the FAQs below. If you can’t find what you are looking for, contact us. We’re happy to answer any questions you may have.

Search FAQs

About the Life in Your Early 50s Survey

  • Why my early 50s?
    • We are keen to hear from you every few years to keep up-to-date with how your lives are changing. Turning 50 is a big milestone, and we’d love to hear about your lives now and what plans you have for the future.

  • Why take part?
    • Taking part in the study is a chance to represent your generation, and to help policymakers work out what support and services to make available to people in the future. The study will inform and improve policy in areas such as health, work and pensions. Most people usually enjoy taking part and find it’s a useful opportunity to reflect on life.

  • Who is running the study?
    • The study is managed by the Centre for Longitudinal Studies at the UCL Social Research Institute, a department of University College London (UCL). The visits are being conducted by two experienced independent social research organisations: NatCen Social Research, and Kantar Public, who have both conducted previous BCS70 surveys.

  • Who is paying for the survey?
    • The Life in Your Early 50s Survey is funded by the Economic and Social Research Council (ESRC).

  • What does the survey involve?
    • We would like you to take part in the following:

      – an interview about your home life, relationships, housing, economic circumstances, and health

      – a paper questionnaire covering wellbeing, values, physical activity and leisure activities

      – an online dietary questionnaire.

      For more information, please take a look at the survey guide.

  • Why do you ask questions about my partner and other members of my family?
    • Our surveys often include questions about your partner, parents, children and other people who you may live with. This is important because family circumstances have a huge impact on people’s lives. We ask for some personal information relating to family members including names. This is so that in later surveys we can refer back to them and ask if their circumstances have changed. We will not include any information that could allow your partner or other family members to be identified in the data made available to researchers.

  • How long will it take?
    • The interview will take around 85 minutes.

  • Is it compulsory to take part?
    • Taking part is completely voluntary, but most members of the study find it an enjoyable and interesting experience to reflect on life. You can skip any questions that you would rather not answer.

  • Can I take part in just the interview part?
    • Yes. It is entirely up to you which parts of the survey you complete. You can do all or some of it, and if there are any questions in any part of the survey that you would prefer not to answer, you can skip these.  After the interview, we may send you reminders about completing the paper questionnaire, online survey (if not completed during the main interview) and the online dietary questionnaire. We send reminders just in case people have forgotten but we understand some people may prefer not to do these. If you’ve just decided not to complete these parts of the survey or have already completed them, please ignore any reminders we may send you.

  • How can I be sure that the interviewer who has contacted me is genuine?
    • All interviewers who work for NatCen Social Research or Kantar Public carry an identity card. Interviewers will have a copy of the letter that was sent to you in advance. You can verify the identity of your interviewer by calling NatCen Social Research, on Freephone 0800 526 397.

  • I need to rearrange my appointment with the interviewer– what should I do?
    • If you need to rearrange your appointment, please call the interviewer directly if you have their telephone number. If you don’t, you can call or email NatCen Social Research on Freephone 0800 526 397 or bcs70@natcen.ac.uk.

  • On which days should I complete the online dietary questionnaire?
    • We would like you to complete the questionnaire on two separate days. Your interviewer will let you know which days during your interview. If you provide us with a mobile number or email address we will send you reminders on the day the questionnaire should be completed.  If you are not sure, please contact us on Freephone 0800 526 397 or bcs70@natcen.ac.uk and we can tell you which days. For more information, please refer to the Online Dietary Questionnaire Leaflet.

  • Why are we doing some interviews by video call?
    • Due to COVID-19 restrictions we started the survey by video call using Microsoft Teams and received positive feedback. As a result of this feedback, we are continuing to conduct some interviews by video call. Please let the interviewer know when they contact you if you would prefer to take part by video call.

  • Do I have to take part via video call?
    • No. From May 2022, most of our interviewers will be able to visit you at home. We have a small team of interviewers who are only conducting video call interviews. If you are asked to take part by video call but would prefer a home visit, please let your interviewer know when they contact you.

  • Will taking part by video call be complicated?
    • No, taking part in a video call interview should be very straightforward for most people. The interviewer will telephone you and talk you through the process and will be able to help with any problems. If there are technical difficulties which stop you taking part via video call, we can arrange to visit you at home to conduct your interview in person. If you do find anything difficult or confusing, please tell us. Your feedback is very important.

  • Is video interviewing secure?
    • Yes. Your video interview will take place using Microsoft Teams. This software has been approved by the UCL Information Security Team. The software uses end-to-end encryption and authentication process which provides the highest level of security. Interviewers will make sure that they conduct the interview in a place where nobody else will be able to see or hear the interview . The interviewer will record your answers on their laptop and the information collected will then be processed securely, in exactly the same way as the information we collect in face-to-face interviews.

  • Will the video interview be recorded?
    • No, we will not be recording the video call interviews.

  • How often will the surveys take place?
    • We’re interested in following your life story. We want to see how your life changes over time, and what your life is like at certain ages. In the past there were some long gaps between surveys, but the funding of BCS70 is now more secure and since you were 26 we have carried out surveys every four years. The Life in Your Early 50s Survey will take place between summer 2021 until early 2023. After that, we plan to carry out surveys roughly every five years.

      The more information that the study gathers about your life over time, the more valuable it becomes. This is why we so appreciate your unique and continued contribution

  • Will an interviewer be able to visit me in my home?
    • Yes. From May 2022, most of our interviewers will be able to visit you at home. If you are asked to take part by video call and would prefer an interviewer to visit you at home, please let the interviewer know this preference when they contact you.

  • What are interviewers doing to reduce the risk of spreading COVID-19?
    • Interviewers will self-assess their health and will not visit you if they have recently had any symptoms of COVID-19.

      They will maintain social distancing during their visit wherever possible.

      If preferred, interviewers will wear masks during the interview.

      They will sanitise their hands and equipment before entering and leaving your home as well as during the visit if they need to hand anything to you.

  • What can I do to reduce the risk of spreading COVID-19 during home visits?
    • If you have any symptoms of COVID-19, the interviewer will reschedule your visit. You can also take the following steps:

      • Wear a mask (if you wish to do so)
      • Open doors and windows to increase ventilation
      • Maintain social distancing where possible
      • Limit the number of people in the room with you at the time of the visit

      We appreciate your support in keeping home visits as safe as possible for everyone

  • What if I am not comfortable having someone visit me at home?
    • If you are concerned about having an interviewer visit you at home right now, please let them know this when they contact you to make an appointment. It is possible to conduct the interview by video call.

  • Who can I contact if I have any concerns after taking part?
    • We hope taking part in our survey will be a positive experience. We know lots of people enjoy taking time out to think about and answer questions about their lives. But if it leaves you worrying about anything that’s happening in your life, there are organisations you can talk to. Visit our helplines page for more information.

Life in Your Early 50s Survey – Adding other information

  • What other information have you added to my data?
    • Information added from mortality records

      NHS Digital periodically inform us if study members have died. The files we receive from NHS Digital tell us when study members have died (month and year) and the cause of death. Receiving this information helps us ensure we do not try to contact people who have died. We also use it for important research. In order to receive this information from the NHS we have to obtain special approval under Section 251 of the NHS Act 2006 from the NHS Confidentiality Advisory Group and NHS Digital.

      During surveys we have asked you for your permission to add information from your health records to the information you have provided us during surveys. We will receive information about your death even if you do not give us permission to add information from your health records. We will also continue to receive this information if you withdraw from the study, unless you request that the data you have provided to the study is deleted.

      Please note that if you opt out of having your records added to the national GP database, or of any other health database, via the NHS national data opt out then the NHS will not send us this information.

      Information added from routine health records

      At the Age 42 Survey, we asked you (or your partner – if you had one) if we could add to the survey data, some information held by the National Health Service (NHS) about your health, such as visits to the doctor, nurse or midwife, hospital attendance or admission and the dates of these visits, health diagnoses or conditions, medicines, surgical procedures or other treatments you have received.

      If you gave us permission, we are now starting to get some information about your health and have added some information from your hospital records. We are also applying to add some information from your mental health records. We have not yet added this information for your partner (if relevant).

      As part of the UK Longitudinal Linkage Collaboration, we are adding other information from your NHS health records to support research into COVID-19. This includes your COVID-19 test results, if you had one, and your vaccination status. We are only doing this if you have given us permission to add information from your health records. If you took part in the COVID-19 web surveys and have used the COVID-19 symptom tracker app, the data collected by the app will be linked to your survey data unless you have opted out of this. See the FAQs, ‘COVID-19 Survey – COVID symptom tracker’.

      These records, combined with the information you have given us during the surveys will allow researchers to look in greater detail at what affects your health, including the factors that prevent or contribute to poor health, and how your health can affect other aspects of your life. This will help policymakers improve services for you and other generations.

      Information added from GP records

      You may have heard in the news about NHS Digital’s plans to create a national central database of GP records. If you have given us permission to access your health records held by NHS, we will be asking NHS Digital to send us your records from this new GP database so we can add them to your survey data. We will not send any of your survey responses to the NHS.

      If you don’t want us to add your data from the GP database or any other NHS records to your survey data, you can contact us to withdraw your permission. You can call us for free on 0800 035 5761 or email us at bcs70@ucl.ac.uk.

      Please note that opting out of having your records added to the national GP database, or of any other health database, via the NHS national data opt out, is separate to opting out of us adding your health records to your survey data. If you have previously given BCS70 permission to add your health records to your survey data, then we will continue to do this. But if you don’t want this to happen, please let us know using the contact details above.

      We would like to assure you that the data will never be used for commercial purposes and will only be used for research. The data will be made available via appropriate conditions of access to researchers via secure mechanisms such as the UK Data Service or similar organisations.

      Information added from routine economic records

      At the age 42 survey we also asked if we could add to the survey data information held about you (or your partner – if you had one) by:

      – the Department for Work and Pensions (DWP), such as benefit claims and periods on employment programmes, and

      – the Her Majesty’s Revenue and Customs (HMRC), about employment, earnings, tax credits and occupational pensions, and National Insurance Contributions.

      We are now in the process of adding this information from your records to the survey data. We have not yet collected this information for your partner (if relevant), but we are intending to add information from their records in the near future too.

  • How long will my permission last?
    • The administrative information we add relates to your past, present and future circumstances. We have not put an end date on the permissions that you give as we do not know exactly when we will add this information. Any permission you give for adding administrative information to the information we collect as part of the study will remain valid and we will collect these records on an ongoing basis – unless you tell us to stop.

       

      As our aim is to follow your whole life’s journey, we have not set a time limit for how long we will keep your records.

  • What is “adding other information”?
    • Government departments and agencies hold information about people which they use for routine administrative purposes.  With your permission we would like to add information from these records to the information you have given us as part of the study. Adding this information to the survey data helps to build up an even fuller picture of participants’ lives. This makes BCS70 even more valuable as it means researchers can use it to answer even more questions about society.

      As part of the Age 42 Survey in 2012, we asked you for your permission to add information from health records held by the NHS and economic records held by the Department of Work and Pensions (DWP) and Her Majesty’s Revenue and Customs (HMRC) to the information you have given us in our surveys over the years. If you lived with a partner at this time we also asked them for permission to add information from their records.

      As part of the Life in Your Early 50s Survey, if you had not previously given your permission to add this information, we will ask your permission again. If you live with a partner who has not previously given permission, we will also ask their permission to add information from their records. If you (or your partner) are asked for your permission in this survey, the interviewer will either show you or provide you a copy of a leaflet which you can also find here.  Further information about permissions collected in this survey are detailed here.

      You can also find out more by watching our video:

  • What information about me do you want to add?
    • The information we would like to add is kept in your health and economic records.

      National Health Service (NHS) records

      The NHS maintains information on all patients accessing health services through routine medical and other health-related records. These records are held within statistical health databases which record information about:

      – admissions or attendances at hospital (including dates of admission, discharge or attendance, diagnoses received, treatments given, surgical procedures)

      – visits to your family doctor or other health professional, e.g. midwife

      – records of specific conditions such as cancer or diabetes

      – prescriptions given.

      Department for Work and Pensions (DWP) records

      The DWP keeps records of everybody’s benefit claims and any periods people spend on employment programmes.

      Her Majesty’s Revenue and Customs (HMRC) records

      HMRC keeps record of everybody’s employment, earnings, tax credits and occupational pensions (since 1998) and National Insurance Contributions since the early 1970s.

      We will only obtain information from these records if we have permission from you.

  • Why is adding this information important?
    • Health records

      We collect information about your health in the interview, but this information is fairly limited in scope. The information recorded in your medical records is objective and based on confirmed diagnoses by medical professionals. However, medical records may not be entirely complete as they will not include details about problems, which have not been reported to a doctor.

      Combining information from the interview with information from your health records would give us a more complete picture of your health.

      This information will allow researchers to answer questions such as:

      – What are the lifestyle factors associated with the onset of particular illnesses?

      – What are the impacts of particular illnesses on other aspects of people’s lives such as employment, income and family life?

      Economic records

      For many years we have been collecting information on your economic circumstances. The information you have provided has allowed researchers to examine a whole range of issues like the financial benefits of education and training, the importance of early childhood circumstances on adult income and social mobility, which is the extent to which people’s social class or economic status changes between childhood and adulthood.

      Over the years, collecting information about sources of income has become increasingly complex, particularly since the widespread introduction of in work benefits and tax credits and changes in eligibility to different benefits and welfare to work programs.

      It is very difficult to collect sufficiently detailed information about tax credits and benefits, but these are increasingly a very important source of income for a lot of families.

      Adding this information would allow researchers to look at important questions that have previously not been tackled in these troubled economic times including:

      – How has the introduction of in-work tax credits impacted on adult work decisions and child poverty?

      – What are the lifetime returns to education and training for people from different family backgrounds? How variable are these estimated returns?

      – How well prepared are study members for retirement and how does this vary by socio-economic background? How has this changed over time?

      – Have government welfare to work programs over the last 15 years worked and if so for whom?

      The information collected by BCS70, including information from administrative records, is collected and used for research purposes only.

  • Why are you asking for my partner’s permission to add information from their records?
    • The circumstances of the people you live with have a big effect on you. If, for example, your partner were to become seriously ill, or were to experience a prolonged period of unemployment, this could clearly have a significant impact on your life. We are only able to collect a very limited amount of information about your partner when we interview you, so adding information from their records will give us a much better understanding of your family circumstances.

  • Can you give me some assurances?
    • – The information cannot and will not be used to identify the health / financial circumstances of any named individual.

      – The information collected from your records will be held securely with no direct personal identifiers (e.g. name, address) – like all other data collected by BCS70.

      – No directly identifiable personal information (e.g. names and addresses) is provided to researchers.

      – This information cannot and will not be used to identify individuals claiming benefits fraudulently.

      – Giving permission will have no impact on any current or future benefit claims.

      – The information from your records will only be used by academic and social policy researchers for non-commercial research.

      – Your decision whether or not to allow us to add information from your records will not affect your participation in the study.

  • How do you add this information?
    • We provide your personal details (name, address, sex, date of birth, NHS or National Insurance Number (NI) – if held) to the NHS or NHS agencies, DWP and HMRC (or to a trusted third party employed by the government department or agency). No other information collected in the survey or held by CLS is passed to these departments, agencies, or to any trusted third party.

      These departments and agencies are trusted to keep your personal details secure (and are likely to already have your personal details) and have robust systems to manage this.

      The NHS, DWP and HMRC will use your personal details to identify the correct records.

      The NHS, DWP and HMRC will de-identify your records and send them to CLS or to the data store where your survey responses are held. CLS will be the data controller of this information.

      The NHS, DWP and HMRC will not use your personal details for any other purpose.

      CLS or the data store will link your records to your de-identified study responses using an anonymous ID. No information that identifies you will be provided to the data store.

      The linked survey and administrative information will be made available to researchers under restricted access conditions. The data store staff and research users cannot identify you from the data.

  • Will the government department and agencies who hold my information see my survey answers?
    • Government departments and agencies will only receive the personal details they need to establish an accurate match to your records – such as name, address, date of birth, NI or NHS number – if available – nothing more. After your records have been identified, these details will be deleted. No information that you have given us during the study will be added to your administrative records.

  • How do you keep my information safe?
    • To keep your information safe, it is encrypted and sent via secure transfer systems. All information collected by BCS70, including information from administrative records, is treated in the strictest confidence in accordance with the Data Protection Act and the General Data Protection Regulation (GDPR).

  • Who will use my information?
    • The information will be made available to researchers under restricted access arrangements via the UK Data Service (UKDS) or similar organisation. Researchers based within the Centre for Longitudinal Studies may be given access to the linked data via the highly secure UCL Data Safe Haven (DSH). Access to the data via the UKDS or the DSH will only be granted in these secure research environments and after a successful application procedure, assessed and approved by the CLS Data Access Committee team and the relevant government department or agency (if required). This is to make sure this information is used responsibly and safely.

      Information provided to researchers will never contain your name, address, date of birth, NHS or NI number.

  • Can I be identified?
    • No. At no point will your name or address be connected to your linked information. We have strict controls about the way that information is added together to ensure that no one can work out who you are. Information from different administrative records will not be included in the same data file if it is possible to identify you.

  • How do the permissions that I (or my partner) are being asked for in the Life in Your Early 50s survey relate to permissions I have given in the past?
    • As part of the Life in Your Early 50s Survey, we will only ask about permission(s), which you did not give at the time of the Age 42 Survey.

      The permissions you (or your partner – if you have one) give now will supplement the permissions given in the Age 42 Survey. Any permissions will remain valid unless they are withdrawn.

  • Can I decide on my partner’s behalf?
    • The information from your partner’s records is very important for us as this will give us a much better understanding of your family and household circumstances. This is, however, your partner’s personal decision.

      If they are not available, when you take part in your interview, we will send you an email (or letter if requested) to pass onto them. This will include an information booklet which explains the ‘adding other information’ request and what happens if your partner decides to give their permission. The email/letter will have a login code and web address for your partner to complete an online consent form.

  • Do I have to give permission for all records that you ask me about?
    • No. You can agree for us to add information from all of the records we ask about, from just some of the records or to add nothing at all – it’s your choice.

  • Can I check what permissions I have given?
    • We will send you an email (or letter if requested) after your Life in Your Early 50s interview which will outline the permissions you have given. If you have any queries about permissions you may have provided in the past, you can contact the BCS70 study team to check this at bcs70@ucl.ac.uk.

  • Can I change my permissions?
    • You can withdraw permission at any time for your NHS, DWP, or HMRC records to be added to your study answers without giving us a reason. This applies for any permissions that you (or you partner) may have given in the past. If we have already added some of your information, we will continue to use it for research purposes only, but we will not add any further information from your records.

      To change your permissions, please email the BCS70 team at bcs70@ucl.ac.uk or write to: 1970 British Cohort Study, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London, WC1H 0AL.

      Please note that opting out of having your records added to the national GP database, or of any other health database, via the NHS national data opt out, is separate to opting out of us adding your health records to your survey data. If you have previously given BCS70 permission to add your health records to your survey data, then we will continue to do this. But if you don’t want this to happen, please let us know using the contact details above.

  • Can I see information from my records?
    • If you want to see the information held about you by any of the data holding government departments or agencies, you need to enquire directly with the individual organisations. We would be happy to provide you contact details for doing so.

COVID-19 antibody testing

  • What is a COVID-19 antibody test and why did you ask me to take one?
    • Antibodies are made by the immune system to fight infection. A COVID-19 antibody blood test will identify whether you may have had COVID-19. We will use the result of the test to help us better understand how many 1970 British Cohort Study participants may have been infected with the virus which causes COVID-19, whether they realised it at the time or not.

      We don’t know yet if having antibodies gives someone long-lasting protection from the virus. The results of this study may be able to help guide public health policy and the government’s plan for its antibody testing strategy.

      Other research studies in the UK also asked their participants to complete the same antibody test. Analysing the information from the 1970 British Cohort Study, alongside these other studies, will give us a better understanding of how many people may have been infected with COVID-19 and why some people develop severe disease.

  • Can I still take part?
    • The deadline for signing up to take part in our COVID-19 antibody testing project has now passed. Thank you to everyone who agreed to take part.

  • Who was invited to take the antibody test?
    • We invited those who took part in at least one of our three recent COVID-19 surveys to take an antibody test.

      Other research studies in the UK also asked their participants to complete the same antibody test. Analysing the information from the 1970 British Cohort Study, alongside these other studies, will give us a better understanding of how many people may have been infected with COVID-19 and why some people develop severe disease.

  • How accurate is the test?
    • The antibody test will be conducted in a research lab, and not an NHS clinical-grade lab and is not 100% accurate or reliable at an individual level. The results show whether or not you have COVID-19 antibodies but cannot give a completely reliable individual diagnosis of whether you have had the virus. It is not known whether having COVID-19 antibodies will prevent re-infection, so regardless of your test result you should continue to follow government guidelines on self-isolation and social distancing. In addition, we encourage all study members to have the COVID-19 vaccine when offered, regardless of your antibody test result.

  • Can I reuse the test kit?
    • No, do not attempt to reuse the test. It is a single-use disposable device which is not intended for multiple uses.

  • When will I get my antibody test results?
    • You should have received your results by now. If you can’t see anything in your spam folder, please email bcs70@ucl.ac.uk.

  • My result came back as ‘not clearly detectable’. What does this mean?
    • This means your blood test did not show a clearly detectable level of certain antibodies against COVID-19 infection. This could be because:

      – You have not been exposed to COVID-19.

      – Antibody status (both the level of the antibodies and the type of antibodies) changes over time from the point of infection, and so antibody levels may have declined.

      – You have been exposed to COVID-19 or had a COVID-19 vaccine but have different antibodies that this research test is not designed to pick up.

      Please be aware this antibody test is being carried out for research purposes only and only picks up certain antibodies against COVID-19. You should continue to follow government guidance on social distancing and self-isolation as appropriate. In addition, we encourage all study members to have the COVID-19 vaccine when offered, regardless of your antibody test result.

  • I’ve had the COVID-19 vaccine, but by test has come back as ‘not clearly detectable’, does this mean the vaccine hasn’t worked and I could still get COVID-19?
    • This antibody test is not a measure of vaccine effectiveness. After vaccination it can take some time for antibodies to appear in the blood which can vary from individual to individual, so depending on when you had your vaccination it may be that they have not yet appeared. It is also important to remember that these tests aren’t 100% accurate. At the moment, we do not know if the vaccine will protect everyone from getting or transmitting COVID-19. By taking part in research and telling us about your vaccination, you are helping us to understand more. Whatever your test result, you should continue to follow government guidance on social distancing and self-isolation as appropriate.

  • My result came back as ‘clearly detectable’. What does this mean?
    • Your blood test showed a clearly detectable level of antibodies against the virus responsible for COVID-19. This means that you may have had or been exposed to COVID-19 in the past and your body has created antibodies. Please be aware this antibody test is being carried out for research purposes only and cannot be used to confirm a current or previous case of a COVID-19 infection.

      You may also have clearly detectable antibodies after receiving a COVID-19 vaccine. This antibody test is not a measure of vaccine effectiveness. You should continue to follow government guidance on social distancing and self-isolation as appropriate.

      In addition, we encourage all study members to have the COVID-19 vaccine when offered, regardless of your antibody test result.

  • My result came back as ‘clearly detectable’ after having a COVID-19 vaccine, does this mean it’s worked and I’m protected from the virus?
    • A positive test result could indicate that you may have had an immune response to the vaccine and have developed antibodies. However, this antibody test is not a measure of vaccine effectiveness and it’s also important to remember that these tests aren’t 100% accurate. It is also possible that the antibodies detected may be present because your body has mounted an antibody response after previous exposure to COVID-19.  At the moment, we do not know if antibodies present in your blood will protect you from getting or transmitting COVID-19. Therefore, whatever your test result, you should continue to follow current government advice.

  • My antibody test result came back as invalid. What does this mean?
    • This means we do not know whether you have antibodies or not because the test did not work.  This may have been because there was not enough blood in the tube you returned or because of a technical problem at the laboratory. Unfortunately, we are unable to send out additional blood collection kits for further testing. You should continue to follow government guidance on social distancing and self-isolation as appropriate. In addition, we encourage all study members to have the COVID-19 vaccine when offered, regardless of your antibody test result.

  • I previously tested positive for COVID-19 antibodies but this study’s result came back as ‘not clearly detectable’. What does this mean?
    • This difference in results may be because:

      – Different antibody tests can measure different antibody types, which can lead to differing results.

      – This antibody test was performed using finger-prick blood sent via post. This means the quality of the blood sample will be lower than that produced with some of the other antibody test conditions, which may affect the antibody research test result.

      – Antibody status (both the level of the antibodies and the type of antibodies) changes over time from the point of infection, and so antibody levels may have increased or declined compared with other tests done at different times.

      Please be aware that all participants should continue to follow guidelines on self-isolation and social distancing as appropriate, regardless of your antibody test result. In addition, we encourage all study members to have the COVID-19 vaccine when offered, regardless of antibody results.

  • My antibody test results say I do not have clearly detectable antibody levels, but I previously I know that I have had COVID-19. What does this mean?
    • This could be because:

      – Antibody status (both the level of the antibodies and the type of antibodies) changes over time from the point of infection, and so antibody levels may have declined over time.

      – You may have been exposed to COVID-19 but have different antibodies that this research test is not designed to pick up.

      You should continue to follow all guidance on self-isolation and social distancing as appropriate. In addition, we encourage all study members to have the COVID-19 vaccine when offered, regardless of antibody results.

  • My antibody test results say I do not have clearly detectable antibody levels, but I previously had symptoms consistent with a COVID-19 infection. What does this mean?
    • This could be because:

      – The symptoms you experienced were the result of a flu or other bug, and you have not been exposed to COVID-19.

      – Antibody status (both the level of the antibodies and the type of antibodies) changes over time from the point of infection, and so antibody levels may have declined over time.

      – You may have been exposed to COVID-19 but have different antibodies that this research test is not designed to pick up.

      You should continue to follow all guidance on self-isolation and social distancing as appropriate. In addition, we encourage all study members to have the COVID-19 vaccine when offered, regardless of antibody results.

  • Who carried out this research project?
    • This research is funded by the UK Research Institute as part of the National Core Studies, designed to understand and defeat COVID-19. The research is being conducted by the 1970 British Cohort Study team at the Centre for Longitudinal Studies at UCL.

      We worked with a company called Thriva, who are a blood testing company. Your name and address were passed to Thriva so that they could send you a kit. They destroyed this information once your kit was posted. The blood test kit was returned to Thriva for analysis and the result of your test was provided to the 1970 British Cohort Study team. Thriva did not link your test result with your contact details.

      You can find out more about Thriva on their website.

      Thriva are contracted by the Department for Health and Social Care to conduct their antibody testing programme.

      We also worked with Kantar Public, the organisation that conducted our COVID-19 Surveys on our behalf. Kantar Public emailed you to invite you to take part in this research and also sent you your test result.

      Thriva and Kantar Public are contractually bound to UCL to keep your data safe and secure, and are accredited to data security standards.

  • What will happen to my test result?
    • The result of your test will be made securely available to researchers along with other information you have provided to the study, to look at the impact of coronavirus on people’s lives. Thriva will retain your test result along with a unique ID for 3 years after completion of the project. They will not retain any other information about you. We are also legally obliged to share the results of the antibody tests with Public Health England. Public Health England may share this information with equivalent bodies in Scotland, Wales and Northern Ireland. The results shared with these organisations will not include any information that would allow you to be identified.

  • What will happen to the blood sample I gave?
    • When we asked if you would be willing to take part in this project we told you that any blood left over after the antibody test has been conducted may be stored for future research.  We can now confirm that this will NOT happen. Any blood which was left over after the antibody test was conducted was destroyed by the laboratory.

  • How will you keep my information safe?
    • Your personal details, the results of your antibody test and your blood sample will be all be treated in the strictest confidence in accordance with the General Data Protection Regulation (GDPR). There is full information about this on our website.

  • Who are the data controllers?
    • University College London is the Data Controller and is committed to protecting the rights of individuals in line with the Data Protection Act 2018 (DPA) and the new General Data Protection Regulation (GDPR).

      Your test result and unique ID will be retained by Thriva for three years. No other information will be retained by Thriva. The Department for Health and Social Care are the Data Controller for the data that will be retained by Thriva.

  • What if I change my mind after giving a blood sample?
    • You can contact us at bcs70@ucl.ac.uk or 0800 035 5761.

      Please note that when we asked if you would be willing to take part in this project we told you that any blood left over after the antibody test has been conducted may be stored for future research.  We can now confirm that this will NOT happen. Any blood which was left over after the antibody test was conducted was destroyed by the laboratory.  None of your blood will be stored for future use.

COVID-19 Survey

  • What is the COVID-19 Survey?
    • We asked study members to complete a series of short questionnaires about their experiences during the coronavirus outbreak.  The first survey took place in May 2020, the second in October 2020, and the third in February 2021.

      The surveys provided study members with an important opportunity to contribute to our national understanding of how the coronavirus has affected the economy, society, and health. To find out more, please visit our COVID-19 Survey page.

  • What should I do if I am worried about coronavirus and its impact?
    • We hope that you and your loved ones are keeping well and healthy during the coronavirus outbreak.

      Please follow the latest government advice: www.gov.uk/coronavirus

      If you think you may have symptoms of coronavirus, please follow the advice and guidance from the NHS: www.111.nhs.uk (England, Wales and Northern Ireland) or www.nhs24.scot (Scotland). You can also call NHS by phoning 111 or phone your GP.

      Many people are experiencing difficulties or need some extra support due to the wider impact of the outbreak and restrictions imposed by the government, for example on finances, health and housing. Some of the organisations able to provide support and free confidential advice are listed below.

      Citizens Advice www.citizensadvice.org.uk – general issues including benefits, housing, debt and consumer issues.

      Family Lives www.familylives.org.uk – advice, information and support on a range of family issues including parenting, school and relationships. Call 0808 800 2222 or email askus@familylives.org.uk

      Drinkline is the national alcohol helpline. Call 0300 123 1110 (weekdays 9am to 8pm, weekends 11am to 4pm).

      Talk to FRANK www.talktofrank.com – advice on drugs and alcohol. You can text them on 82111, phone FRANK for free on 0300 123 6600 or get advice via webchat.

      Samaritans www.samaritans.org – if you have concerns, worries or are struggling to cope phone 116 123 at any time or email jo@samaritans.org

      Refuge www.nationaldahelpline.org.uk – national domestic abuse helpline. Call 0808 2000 247 at any time.   

  • What happens to the information I give?
    • The information you give us will be held securely and treated in strict confidence in accordance with the Data Protection Act 2018 and the General Data Protection Regulation. Any information that may identify you, such as your name, your contact details and any other details that may identify you, will be kept separate from your answers to the questionnaire. We hold any information which could identify you securely and never make this available to researchers.

      The answers you give in the questionnaire will be made available securely to researchers, along with other information held by the study about you, to look at the impact of coronavirus on people’s lives.

      The surveys have asked you to express in your own words how the Coronavirus outbreak has affected you. Responses to this question will also be made available to researchers and may also be used in communications about the survey and about research using the survey data. As with all the information you share with us, responses to this question will be de-identified before anyone can use them. You may be able to recognise your own response, but other people will not be able to identify you through your response.

      See the ‘Privacy and data protection’ FAQs for more details about how we use your personal information.

  • How do you keep my information safe?
    • All information collected by and added to BCS70 is treated with the strictest confidence in accordance with the Data Protection Act 1998 and the General Data Protection Regulation (GDPR).

      See the ‘Privacy and data protection’ FAQs for more details about how we keep your data secure.

COVID-19 Survey – COVID symptom tracker

Blood samples and DNA from the Age 46 Survey

  • Why did you want to take a blood sample?
    • The collection of blood samples will help us to carry out important health research. For example, researchers could use information from the survey and blood sample to understand things like how diet may influence cholesterol, or how different lifestyles can affect the chances of heart disease.

  • Why did you want to take my DNA?
    • If you gave your permission, we will have stored DNA from your blood to use in future research. Previous research shows that an increasing number of illnesses have a genetic element, including cancer, diabetes, asthma and certain heart conditions.

      Looking at the genes from a large number of people, combined with all of the other information we have collected about your health and your lifestyle, will help researchers to identify which genes are linked to certain conditions. This will help with understanding who is most at risk, which may in turn lead to improved diagnosis, treatment and disease prevention.

  • Will I get any results from my DNA sample?
    • If you consented to us extracting DNA from your blood sample, we will not be able to provide you with the results of genetic testing.  The tests that will be done on your DNA are for research purposes, and are not the same as clinical genetic tests. The results cannot be used for individual diagnosis. As such, we will not routinely feed back your individual results, but we will share the broader findings from the research with all study members, in our regular mailings and on our website.

  • Could the DNA be used for cloning humans?
    • BCS70 will not use your DNA for cloning humans. The use of human tissue and DNA is strictly controlled. The organisations that fund this research, the UCL Social Research Institute and the Access Committee, do not allow human cloning.

  • What if I have changed my mind?
    • You can withdraw your consent for the use of your samples at any time, without giving any reasons, by writing to us at  1970 British Cohort Study, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way London, WC1H 0AL. We will then inform the laboratory and the stocks of your samples will be destroyed.

Why am I unique?

  • Why are BCS70 study members so special?
    • Life for your generation is different to the lives of your parents and grandparents, and to the lives of younger generations. So we are following your lives to understand and learn from your special generation.

      The 1970s, when you were born, was a decade of economic instability and growing inequality. While unemployment was low in the early 1970s, the decade saw growing industrial and social unrest. Strike action culminated in the ‘winter of discontent’ in 1978-79, and the Troubles began to unfold in Northern Ireland.

      More than a third of you lived in council housing at the age of 5. In 1979, Margaret Thatcher became Britain’s first female Prime Minister. A global economic recession overshadowed much of the 1980s. Several public industries were privatised, and much of the state’s social housing stock was sold off under the ‘right to buy’. Today, home ownership remains lower among your generation than for those born in 1946 and 1958.

      There were significant reforms to education when you were young. The vast majority of you attended comprehensive schools, following the slow decline in grammar schools and secondary moderns throughout the 1970s. By age 42, a quarter of you had a university degree. While this may seem low by contemporary standards, it is significantly higher than amongst those born in 1946 and 1958. Less than one in five of those born in 1958 and fewer than one in ten born in 1946 obtained a degree. The greatest advances were made by women – 25 per cent of women born in 1970 have university degrees, compared to just 6 per cent of women born in 1946.

      But while educational opportunities improved for your generation, general health has worsened. Convenience foods became more common in the 1980s, as did car ownership. People became less and less physically active. By the age of 16, those born in 1970 were significantly more overweight than generations before them. You also drank more during your teenage years, but were less likely to smoke.

      These are just of the few of the differences between your generation and the lives of older and younger generations. We want to know how your experiences have impacted on your life so far and how they will affect the rest of your life.

      By taking part in BCS70, you are acting as the voice of your generation. You are one of around 17,000 people who have taken part over the years. Each and every one of you brings something unique to the study, and together, you represent the diversity of the BCS70 generation. That’s why it’s so important that people from all different sorts of backgrounds continue to take part in the study. Without you, we don’t hear the whole story and the picture is not complete.

      To learn more about why the study was started, visit the ‘History of the study’ page.

  • Why have I been specially chosen?
    • In the late 1960s, there was a lot of concern about the number of babies born with abnormalities, or dying very early in life. Doctors and others wished to examine the factors associated with good health in mothers and babies. It was decided that the best way to do this would be to study all the babies born in Britain in one week – and that just happened to be the week in 1970 when you were born! The midwives who delivered the 17,000 of you born in England, Wales and Scotland in that week asked your mothers if they would be willing to take part in the study which was then known as the British Births Survey.

      Five years later it was decided that it would be worthwhile to try and find as many of your families again, to see what had happened to you – how healthy you were, how you were getting on at school and so on. Since then, as you know, the study has gone on to follow you throughout the rest of your childhood and on in to adulthood.

      *Those born in Northern Ireland were not followed up in subsequent surveys.

  • Why should I take part?
    • By taking part in BCS70, you’re helping to shape society and to make life better for your generation and the next. Politicians, teachers, doctors, nurses, social workers and others use findings from the study to improve services and policies to help people like you. You can find out more about how the study has made a difference on the ‘What have we learned’ pages.

      BCS70 is trying to capture the story of your life, and only you can tell it. We have been following you since you were born and we really want to continue following the rest of your lives as well.

      You’re unique and irreplaceable. If you choose not to take part, we cannot replace you with anyone else. Without you, we don’t have the whole story.

      It’s important that we understand what life is like for people from all different parts of the country, different family backgrounds and different ethnicities. That’s why we need as many of you as possible to keep taking part – each and every one of you brings something new to the picture and together, you represent the diversity of the BCS70 generation.

  • Who else takes part?
    • More than 17,000 people have taken part in BCS70 since it started.

      As you were growing up, your parents or guardians will also have taken part in the study as well. During your time at school information was also collected from your teachers. In 2004, when you were 34, we asked your children (if you had any at this time) to complete a questionnaire and a number of assessments. You can learn more about who we’ve spoken to on the ‘Survey’ pages.

      In 2012, when you were 42, we asked your partners (and you) to give us permission to add information from health records held by the NHS and economic records held by the Department of Work and Pensions (DWP) and Her Majesty’s Revenue and Customs (HMRC) to the information you have given us in our surveys over the years. Find out more about adding information to your survey answers.

Taking part

  • What will you ask me about?
    • At each survey, we’ll ask you about things that are relevant to your lives. When you were younger, we asked you about school, friends, family life and your hopes for the future. Now you are older, we’ll ask you about things like work, health, whether you get married or have children, and about your attitudes and beliefs. We’ll write to you before each survey to tell you all about what is involved.

      If you move or if your contact details change, please let us know as soon as you can. This means we can make sure you get information about BCS70 and that we can contact you to invite you to take part in each survey.

  • How often will the surveys take place?
    • We’re interested in following your life story. We want to see how your life changes over time, and what your life is like at certain ages. In the past there were some long gaps between surveys, but the funding of BCS70 is now more secure and since you were 26 we have carried out surveys every four years. The Age 50 Survey is currently underway and will conclude in 2021. After that, we plan to carry out surveys roughly every five years.

      The more information that the study gathers about your life over time, the more valuable it becomes. This is why we so appreciate your unique and continued contribution.

      It is up to you to decide whether or not to take part in each survey. We will send you information before each survey to let you know what it will involve. If you move home between surveys, it would be very helpful if you could contact us with your new address.

  • Why do you come to see me at certain ages?
    • We’re interested in following your life story. We want to see how your life changes over time, and what your life is like at certain ages. We choose key points in your life to visit you, which are interesting and important for particular reasons.

      BCS70 is like a photo album not only of your life, but of all the other study members too. That’s what makes it so interesting, and this is why you are so important, as you cannot be replaced.

      The more information that the study gathers about your life over time, the more valuable it becomes. This is why we so value your unique and continued contribution.

  • How long will the study continue?
    • We hope that the study will continue throughout your life. Other similar studies, which started in 1946 and 1958, are still continuing today. After the current survey, the Life in Your Early 50s Survey, future surveys are likely to take place every five years.

  • What if I no longer want to take part?
    • We really hope that you continue to take part. However, the study is voluntary so if you no longer want to take part in the next survey or in any future surveys, please contact us to let us know.

      If you are not sure whether you’d like to continue to take part or if you have any questions about taking part, please do not hesitate to contact us. We really value the contribution you make to the study and are always happy to talk to you and answer any questions you may have.

      Without you BCS70 is not possible. If you decide not to take part, we can’t replace you with anyone else. Your unique contribution is incredibly valuable.

      To find out more about how your involvement helps make a difference to society visit the ‘What we’ve learned’ pages.

  • Can I rejoin the study if I missed a previous survey?
    • Yes! We’d like everyone to take part each time we visit. But it’s up to you to decide whether or not to take part each time. If you miss a survey, you can still remain in the study and do the next survey.

      Even if you haven’t taken part for a while, we would love you to take part again. There’s a lot we can learn from how your lives have changed since you last took part even if we don’t have all the details of your life in between.

      Each survey is important because we focus on different aspects of your lives each time we get in touch. The more information that the study gathers about your life over time, the more valuable it becomes. This is why we so value your unique and continued contribution.

      If you are not sure about whether to take part or if you have any questions about taking part, please do not hesitate to contact us. We really value your contribution and are always happy to talk to you and answer any questions you have.

  • What information do you need from me?
    • If you move or if your contact details change, please let us know as soon as you can. This means we can make sure you get information about the study and that we can contact you to invite you to take part in each survey.

      During each survey, we will ask you for information about lots of different aspects of your life. We’ll write to you before each survey to tell you all about what is involved.

  • Should I tell other people I am part of BCS70?
    • It’s fine to tell family and friends that you are part of the study. We do advise you not to make this detail public though, for example on social media, as this could risk compromising your anonymity.

Keeping in touch

  • What sort of information will you send me?
    • We send birthday cards to study members every year and with this we will updates about BCS70 to make sure you know what is coming up, what we’ve learned, and how the study has made a difference. We will send additional information from time to time. You can download some of the materials we’ve sent you in the past from the ‘Resources’ page.

      Before each survey, we’ll write to you to tell you everything you need to know about what is involved. You might want to know when the survey is taking place, or how long it will take. We’ll always try to answer any questions you have. After each survey, we’ll also write to thank you for taking part.

      Between surveys, we will send you results from the study telling you what we have found out. It can take a while to put together all of the information you give us, so it is usually a few years after each survey before we can send you the results.

      We also keep the study website up to date with news and findings from the study.

  • How do I find out the results from BCS70?
    • We will write to you regularly with news from the study, telling you what we’ve found out about your generation. It can take a while to put together all of the information you give us, so it is usually a few years after each survey before we can send you the findings.

      The information from the study is being used all the time by researchers around the world, so new findings are always emerging. To find out more about the study so far, visit the ‘What have we learned?’ page.

  • Why is it important to keep my contact details up to date?
    • You’re such a valuable part of the study and we really value your input. We want to make sure that we have the right contact details so that we can keep you up to date with the study and contact you to invite you to take part in each survey.

      Updating your contact details is simple to do. All you have do is either call us via the Freephone telephone number (0800 0355 761), or email us at bcs70@ucl.ac.uk. Your call and/or email will be treated in the strictest confidence. You can also update your details by completing this online form. From time to time, we may also send you a change of details form or card to help you to do this.

  • What do I do with the change of details form you’ve sent me?
    • You simply fill out the form that we sent you with any new information such as address changes, new phone and email addresses, or changes to a contact person’s details, and return it to us. If you prefer you can update us with your new details by Freephone (0800 0355 761), or by email (bcs70@ucl.ac.uk) and dispose of the form.

      If you cannot find your form, please confirm your contact details by Freephone (0800 0355 761) or by email (bcs70@ucl.ac.uk). Your call and/or email will be treated in the strictest confidence.

How we find you

  • How do you find us if we move?
    • We need to keep in touch with as many of you as possible to make sure BCS70 continues to represent the diversity of your generation. If we find out that you’ve moved, we will try to find your new address.

      We first try to contact you through the direct links you have given us, such as phone numbers, email addresses and your postal address.

      If that doesn’t work, then we will try to contact any family members or friends whose details you have given us. If we still haven’t found you, we will check the electoral register and the telephone book, both of which are public records and available electronically. We may also try to find you using internet searches, by looking on social media sites and by using information held by government department and agencies.

      All of this tracing is usually done before the next survey starts so that we can provide interviewers with your current email address, telephone number or home address. However, if we have not been able to locate you, or if the interviewer finds out you have moved, then they will also try to find out where you’ve moved to. As well as trying to make contact by phone and in person, the interviewer may also call at your old address to speak to the new residents and call on neighbours. When we are looking for you, we won’t reveal to other people, apart from your family and friends, that you are part of BCS70.

  • Do you use information held by Government to find us?
    • We try to trace study members using information held by government departments and agencies.

      We securely transfer the personal details (name, sex, date of birth, and last known address) of study members to NHS Digital who use these details to identify our study members using the NHS Personal Demographic Service (PDS), a database which holds details of users of health and care services in England.  Once study members are identified on the PDS, NHS Digital periodically send us up-to-date addresses.

      NHS Digital will also inform us if you have died or moved out of the country.

      BCS70 has also tried to trace study members using records held by the Department for Work and Pensions (DWP) and we may use other government databases in the future.

      This kind of personal information is not given out routinely by government departments and agencies. Special permissions are needed, and this is only done after a careful review of why this information is needed, ethical issues and data security procedures. For the information coming from the NHS, special approval under Section 251 of the NHS Act 2006 from the NHS Confidentiality Advisory Group and NHS Digital Data Access Advisory Group is needed.

  • Do you use information held by private companies to find us?
    • If we are unable to find you in any other way we use the services of AFD Software, a company which specialises in contact-details validation. Read more about AFD Software on their website.

      We securely transfer the personal details (name, sex, date of birth, and last known address) of study members to AFD. AFD then use these details to identify our study members in a range of other databases which are managed by other companies including Royal Mail and Experian. When study members are successfully matched to another database then AFD will supply us with updated addresses and we will use these to try and reach you.

      No information other than contact details is shared with AFD. AFD do not have access to any other information which may be held in the other databases that they search. AFD are contractually obliged not to use the information we share with them for any other purpose and they destroy all data after each matching exercise is complete.

       

  • Do you use the internet and social media to find us?
    • Sometimes we try to find study members using the internet and social media. This may involve carrying out internet searches, for example using Google, and searching on Facebook and other social media sites. We also know that it can be difficult to identify people accurately on the internet and social media. So, whenever we are searching in this way, we will not reveal the name of the study in case the person we contact isn’t one of our study members.

  • What if I leave the country?
    • If you move abroad please let us know your new contact details, including your address, telephone number and email address so that we can keep in touch and send you letters and updates.

      You can contact us with these details by Freephone (0800 0355 761), or by email (bcs70@ucl.ac.uk). Your call and/or email will be treated in the strictest confidence.

      It is not usually possible for study members living abroad to take part in the surveys. However, you can re-join the study and be included in the next round of interviews if and when you return to Great Britain.

      In the future, it may be possible for study members living abroad to conduct the survey remotely through web or telephone interviews.

  • What do I do if I move?
    • It would be very helpful (as well as saving us time!) if you could contact us to let us know where you have moved to. This is simple to do. All you have do is either call us via the Freephone telephone number (0800 0355 761) or email us at bcs70@ucl.ac.uk. If you have recently taken part in a survey you can also return the Change of Address card which was left by your interviewer. Your call and/or email will be treated in the strictest confidence.

Privacy and data protection

About adding other information

  • Do you add any other information to my data?
    • Information from administrative records held by Government departments and agencies

      Government departments and agencies hold information about people, which they use for administrative purposes. From time to time, we add information from these routine administrative records to the study data. We only do this if we have permission from you. Adding this information to the survey data helps to build up an even fuller picture of participants’ lives. This makes BCS70 even more valuable as it means researchers can use it to answer even more questions about society.

      In the age 42 Survey in 2012, we asked you for your permission to add information from health records held by the NHS and economic records held by the Department for Work and Pensions (DWP) and Her Majesty’s Revenue and Customs (HMRC) to the information you have given us in our surveys over the years. If you lived with a partner at the time we also asked them for permission to add information from their records.

      As part of the Life in Your Early 50s Survey, if you had not previously given your permission to add this information, we will ask your permission again. If you live with a partner who has not previously given permission, we will also ask their permission to add information from their records.

      If you have given us permission, we will securely send your personal details (such as name, sex, date of birth, address, NHS and National Insurance number – if available) to the government department or agency (or to a trusted third party employed by the government department or agency). We don’t send any other information about you, or any of your answers to the surveys. The government bodies or agencies only use these details to identify the records in their systems and then send the information from these records to us or to the data store where we deposit the study data. These departments and agencies are trusted to keep your personal details secure (and are likely to already have your personal details) and have robust systems to manage this.

      When the information from the records is sent to us or to the data store, it is added to the information collected in the study, and made available to researchers under restricted access arrangements. Names, addresses, National Insurance and/or NHS numbers, are never disclosed to data stores or to researchers.

      The permissions for adding other information can be changed or withdrawn at any time, without giving us any reason. This can be done by writing to us at 1970 British Cohort Study, UCL Social Research Institute, 20 Bedford Way, London, WC1H 0AL, or by emailing the BCS70 team at bcs70@ucl.ac.uk.

      Mortality information from the NHS

      NHS Digital periodically informs us if study members have died. The files we receive from NHS Digital tell us when study members have died (month and year) and the cause of death.  Receiving this information helps us ensure we do not try to contact people who have died. We also use it for important research.  We do not ask your permission to receive this information but in order to obtain it we have to be granted special approval under Section 251 of the NHS Act 2006 from the NHS Confidentiality Advisory Group and the NHS Digital Independent Group Advising on the Release of Data also need to grant us permission.

      During surveys we have asked you for your permission to add information from your health records to the information you have provided us during surveys. We will receive information about your death even if you do not give us permission to add information from your health records. We will also continue to receive this information if you withdraw from the study, unless you request that the data you have provided to the study is deleted.

      Please note that if you opt out of having your records added to the national GP database, or of any other health database, via the NHS national data opt out then the NHS will not send us this information.

      Information about where you live

      We use your address (and previous addresses) to add information about where you live such as the local environment, weather, pollution and the facilities available (e.g. shops and green spaces).  The information that we add may be about your local area as a whole, your street or sometimes your specific address.  Where we live has a huge impact on many aspects of life, and so understanding more about your area and where you have lived previously is hugely useful for research.  For example, research using NCDS, one of the other cohort studies that we run, has used area information from the Census to show that living in deprived areas is linked to poorer health.

      All of the information provided to researchers is de-identified and does not allow individuals, or addresses to be identified.

      We do not ask your permission to add this information because the data is not individual level information about you. Usually this information is publicly available and adding this information does not require us to share any of your personal information with any other organisations.

      However, if you would prefer that we don’t add any information about your area to your study record then please let us know by writing free of charge to: 1970 British Cohort Study, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London, WC1H 0AL, or emailing the BCS70 team at bcs70@ucl.ac.uk.

      Other information

      We may also add other information which is not about you individually, but is for example about the school or University that you went to.

  • What other information have you added to my data?
    • Information added from mortality records

      NHS Digital periodically inform us if study members have died. The files we receive from NHS Digital tell us when study members have died (month and year) and the cause of death. Receiving this information helps us ensure we do not try to contact people who have died. We also use it for important research. In order to receive this information from the NHS we have to obtain special approval under Section 251 of the NHS Act 2006 from the NHS Confidentiality Advisory Group and NHS Digital.

      During surveys we have asked you for your permission to add information from your health records to the information you have provided us during surveys. We will receive information about your death even if you do not give us permission to add information from your health records. We will also continue to receive this information if you withdraw from the study, unless you request that the data you have provided to the study is deleted.

      Please note that if you opt out of having your records added to the national GP database, or of any other health database, via the NHS national data opt out then the NHS will not send us this information.

      Information added from routine health records

      At the Age 42 Survey, we asked you (or your partner – if you had one) if we could add to the survey data, some information held by the National Health Service (NHS) about your health, such as visits to the doctor, nurse or midwife, hospital attendance or admission and the dates of these visits, health diagnoses or conditions, medicines, surgical procedures or other treatments you have received.

      If you gave us permission, we are now starting to get some information about your health and have added some information from your hospital records. We are also applying to add some information from your mental health records. We have not yet added this information for your partner (if relevant).

      As part of the UK Longitudinal Linkage Collaboration, we are adding other information from your NHS health records to support research into COVID-19. This includes your COVID-19 test results, if you had one, and your vaccination status. We are only doing this if you have given us permission to add information from your health records. If you took part in the COVID-19 web surveys and have used the COVID-19 symptom tracker app, the data collected by the app will be linked to your survey data unless you have opted out of this. See the FAQs, ‘COVID-19 Survey – COVID symptom tracker’.

      These records, combined with the information you have given us during the surveys will allow researchers to look in greater detail at what affects your health, including the factors that prevent or contribute to poor health, and how your health can affect other aspects of your life. This will help policymakers improve services for you and other generations.

      Information added from GP records

      You may have heard in the news about NHS Digital’s plans to create a national central database of GP records. If you have given us permission to access your health records held by NHS, we will be asking NHS Digital to send us your records from this new GP database so we can add them to your survey data. We will not send any of your survey responses to the NHS.

      If you don’t want us to add your data from the GP database or any other NHS records to your survey data, you can contact us to withdraw your permission. You can call us for free on 0800 035 5761 or email us at bcs70@ucl.ac.uk.

      Please note that opting out of having your records added to the national GP database, or of any other health database, via the NHS national data opt out, is separate to opting out of us adding your health records to your survey data. If you have previously given BCS70 permission to add your health records to your survey data, then we will continue to do this. But if you don’t want this to happen, please let us know using the contact details above.

      We would like to assure you that the data will never be used for commercial purposes and will only be used for research. The data will be made available via appropriate conditions of access to researchers via secure mechanisms such as the UK Data Service or similar organisations.

      Information added from routine economic records

      At the age 42 survey we also asked if we could add to the survey data information held about you (or your partner – if you had one) by:

      – the Department for Work and Pensions (DWP), such as benefit claims and periods on employment programmes, and

      – the Her Majesty’s Revenue and Customs (HMRC), about employment, earnings, tax credits and occupational pensions, and National Insurance Contributions.

      We are now in the process of adding this information from your records to the survey data. We have not yet collected this information for your partner (if relevant), but we are intending to add information from their records in the near future too.

  • How long will my permission last?
    • The administrative information we add relates to your past, present and future circumstances. We have not put an end date on the permissions that you give as we do not know exactly when we will add this information. Any permission you give for adding administrative information to the information we collect as part of the study will remain valid and we will collect these records on an ongoing basis – unless you tell us to stop.

       

      As our aim is to follow your whole life’s journey, we have not set a time limit for how long we will keep your records.

  • What if I don’t want you to add other information about me anymore?
    • You can withdraw your permission to add information from your administrative records at any time, without giving us a reason. If we have already added some of your information, it will continue to be used for research purposes only, however, we will not add any further information from your records. To change your permissions, write to us free of charge to: 1970 British Cohort Study, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London, WC1H 0AL, or email the NCDS team at bcs70@ucl.ac.uk.

  • Who will use the linked survey and administrative information?
    • The information will be made available to researchers under restricted access arrangements via the UK Data Service (UKDS) or similar organisation. Researchers based within University College London may be given access to the linked data via the highly secure UCL Data Safe Haven (DSH). Access to the data via the UKDS or the DSH will only be granted in these secure research environments and after a successful application procedure, assessed and approved by the CLS Data Access Committee team and the relevant government department or agency (if required). This is to make sure this information is used responsibly and safely.

      Information provided to researchers will never contain your name, address, date of birth, NHS or NI number.

Making the data available for research

  • Where do researchers go to get the study data?
    • We deposit your de-identified survey responses with the UK Data Service, based at the University of Essex, and the UK Longitudinal Linkage Collaboration, based at the University of Bristol. Making the study data available through these central data stores makes it easier for scientists from different sectors, working in a wide variety of fields, to access and use the information in their research.

      Researchers based within University College London (UCL), where the study is run from, may be given access to the data via the highly secure UCL Data Safe Haven (DSH).

  • What is the UK Data Service?
    • The UK Data Service is funded by the Economic and Social Research Council (ESRC) to meet the data needs of researchers, students and teachers from all sectors. The UK Data Service collection includes major UK government-sponsored surveys, cross-national surveys, longitudinal studies, UK census data, international aggregate data, business data, and qualitative data. We deposit de-identified data from all the studies that we run, including BCS70.

  • What is the UK Longitudinal Linkage Collaboration?
    • The UK Longitudinal Linkage Collaboration (UK LLC) is a UK government-funded initiative that will help researchers investigate the effects of COVID-19 and its implications for public health policy. It is part of the National Core Studies, a major UK government-funded research initiative.

      Across the UK, thousands of people are taking part in longitudinal studies like BCS70, which follow participants over time. At the Centre for Longitudinal Studies (CLS), we run four studies – the 1958 National Child Development Study, BCS70, Next Steps, and Child of the New Century (also known as the Millennium Cohort Study). There are many other studies in the UK, similar to these. Among others, these include, Avon Longitudinal Study of Parents and Children, Generation Scotland, National Survey of Health and Development, Southall and Brent Revisited, Twins UK, UK Biobank and Understanding Society.

      Each study collects vital information which allows researchers to answer key questions about the factors which affect people’s experiences and circumstances throughout their lives. The UK LLC will bring together de-identified data from many of these studies including the four studies we run at CLS, together with linked administrative data, into a single database which will be available to approved researchers for approved research projects. Combining the data from these studies together will make the data even more valuable, creating a resource which will further increase the potential for research. For more details see Adding information to your data and refer to the UK LLC privacy policy.

  • How do these data stores keep my information safe?
    • Access to your survey responses by staff at the data stores is limited to those who manage and prepare the data for access and to those who keep the system safe.

      The data are de-identified at all times, and steps are taken to ensure confidentiality and data security. The data services have leading Information Security accreditation (ISO27001) and are regularly audited by IT professionals, the NHS and UK statistics agencies.

      Legitimate researchers are able to apply to access the data under a strict licence agreement and required to use the data for legitimate purposes. Where your routine administrative records have been linked to your survey responses, additional measures are in place, including limiting access to researchers based in the UK and to researchers who need to demonstrate that they will be competent and safe users, that their project is in the public interest, is not run for profit making purposes, and will meet the requirements of CLS and the owners of the administrative data.

About social research

  • What is social research?
    • Social research is research conducted by social scientists, such as anthropologists, economists, psychologists and sociologists. It aims to understand human behaviour, mental processes, and how people interact in society. In quantitative social research, researchers apply different statistical methods to data in order to do this. The objective of their research is to understand how and why people fare differently in life, and therefore how policies can be designed to help improve the lives of some.

  • What is survey research?
    • Survey research involves collecting information from a sample of individuals through their answers to questions. Surveys are used in lots of parts of our society, for example by retail companies to understand shoppers’ preferences, in polls to reveal people’s voting intentions, and in studies such as BCS70. Surveys are carried out in different ways – including face-to-face or over the telephone with an interviewer, or on the internet by self-completion.

  • What is a birth cohort study?
    • A birth cohort study follows a group of people that were born at a similar date or period of time – be it a day, month, year or decade, for instance. It follows these people throughout their lives, and collects information from them at particular ages. By following the same people over time, these studies are able to tell us how and why people change as they get older. BCS70 is a cohort study following people born in one week in 1970.

  • Why are birth cohort studies so valuable?
    • Our society is changing fast. Findings from birth cohort studies are used to chart and understand how society has changed over the years, and how life experiences are different for each generation. They help understand the impact of societal trends such as our ageing population and the growth in lone-parent and step-families, and changes such as growing employment insecurity.

      Cohort studies help understand that change. Evidence from cohort studies have contributed to many policy decisions in diverse areas – such as increasing the duration of maternity leave, raising the school leaving age, updating breast feeding advice given to parents.