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.

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COVID-19 antibody testing

  • What is a COVID-19 antibody test and why are you asking 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 Next Steps participants may have been infected with the virus which causes COVID-19, whether they realised it at the time or not.

      Even if you don’t think you have had COVID-19, please complete the test as it is possible to have had the virus without realising it. It is also important for researchers to collect information on those who do not have antibodies as well those who do. Even if you have had the COVID-19 vaccine, we would like you to take part.

      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 are also asking their participants to complete the same antibody test. Analysing the information from Next Steps, 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.

  • Who is being invited to take the antibody test?
    • We are inviting 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 are also asking their participants to complete the same antibody test. Analysing the information from Next Steps, 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.

  • What is involved?
    • – If you agree to take part, we will send you a blood collection kit in the post.

      – Everything you need, and full instructions on how to collect your blood, will be inside your blood collection kit.

      – You will need to prick your finger and collect about 10 drops of blood into a small tube.

      – We have a short video showing you what’s in the kit, and how to use it.

      – You would then return the sample in the pre-paid envelope provided with the kit.

      – We will test your blood for antibodies and let you know your results.

      – We may also contact you again to ask you to provide another blood sample for antibody testing in the future.

  • Are there any health or medical reasons why I should not give a blood sample?
    • You should not take part if you have a medical condition which means you are at increased risk of bleeding or you are taking any anti-coagulant drugs such as warfarin.

  • Do I have to take part?
    • No. Choosing to take part in the research is entirely up to you. If you decide not to participate, this decision will not in any way affect your continued participation in Next Steps or any NHS treatment you receive. If after receiving your kit you decide you no longer want to take part, please throw away the testing kit as set out in the instructions which come with the kit. 

  • What are the possible risks or side-effects of taking part?
    • Collecting the blood sample requires a finger prick which can feel like a little pinch and which may cause some people a small amount of discomfort. You should not take part if you have a medical condition which means you are at increased risk of bleeding or you are taking any anti-coagulant drugs such as warfarin.

  • 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 will tell you 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.

  • What are the benefits and risks of taking part?
    • Other population-based research studies in the UK are asking their participants to provide a sample for the same antibody testing. Analysing the information from Next Steps alongside these other studies will help us understand who has had COVID-19, and why some people develop severe disease and others do not.

      Potential benefits:

      Your involvement will contribute to the fight against COVID-19.

      Antibody tests are not widely available. By taking part in this study you will have access to one.

      Possible risks:

      Your finger may be a bit sore from the finger prick needed to produce blood drops. As you would with any small cut, the area should be kept clean to avoid infection. However, the process and products in the kit are used routinely in a wide range of healthcare applications, including measurement of blood glucose levels in the management of diabetes. The equipment is sterile and following the instructions provided in the kit will minimise risk of infection (such as cleaning the area before and after). In the unlikely event you injure yourself or feel unwell, please seek medical attention. Use the NHS 111 online service. If you do not have internet access, call NHS 111. For a medical emergency dial 999.

  • Can I take part in this study if I have been vaccinated?
    • Yes. We would like you to take part in this research whether or not you have received a COVID-19 vaccine (either one or both doses). The online consent form will ask you to let us know whether you have been vaccinated.

  • Can I take part if I didn’t take part in one of the COVID-19 Surveys?
    • No. Unfortunately we can only offer antibody tests to those who took part in the COVID-19 Surveys.

  • Can someone else provide a blood sample instead of me?
    • No. Please do not give the blood collection kit to anyone else. The result of the test will be linked to your information which would make the results inaccurate.

  • How do I provide the blood sample?
    • – If you agree to take part we will send you a blood sample collection kit by post.

      – When you receive the kit, please open it, and read all the instructions carefully. You will need to prick your finger, using the lancets provided and collect about 10 drops of blood, which is about 0.5ml or one tenth of a teaspoon, into a small tube.

      – We have a short video showing you what’s in the kit, and how to use it. Please watch the video before you start.

      – When you’ve taken the sample, please return the tube containing the sample and lancets in the pre-paid envelope provided in the kit.

      – We will send you the result of the test within four to six weeks.

  • How do I return my sample?
    • Once you have collected your sample, please ensure that you label your sample and complete the return form before you post it back. It’s really important that your sample is labelled correctly otherwise we will not know who it belongs to. You can find additional information on how to label and return your sample in this guidance document.

  • I’m not quite sure how to complete the blood collection. Is there a video I can watch?
    • Yes – a video is available here. Please be aware there may be minor differences between your kit and the one demonstrated in the video. Make sure you read both sides of the instruction sheet provided in your kit before starting the blood collection.

  • I’ve used the lancets provided in my kit but I have not been able to reach the 600 line on the blood tube. Should I still send back my blood tube?
    • Yes please. Thriva will do their best to test your blood for antibodies, although this may not be possible if the volume of blood collected is too small. Do not attempt to prick your finger with anything other than the medical lancets provided.

  • I am having trouble doing the test, can you help?
    • Please refer to the instructions that came with the test kit for full details about how to do the test. There is also a video that you can watch that goes through the test step-by-step. Someone else in your household may also be able to help if you are having trouble.

  • Can you send me another test kit?
    • Unfortunately, we are not able to send you a replacement.

  • 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.

  • I’ve injured myself or feel unwell during the test – what should I do?
    • In the unlikely event you injure yourself or feel unwell, please seek medical attention. Use the NHS 111 online service. If you do not have internet access, call NHS 111. For a medical emergency dial 999.

  • When will I get my antibody test results?
    • 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. This research antibody test is not a measure of vaccine effectiveness.

      We will send you your antibody research test results by email within four to six weeks of you sending back your blood sample in the post. We will tell you whether you have clearly detectable antibodies or not, or if the result was invalid.

  • 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 will tell you 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.

  • 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 is carrying 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 Next Steps team at the Centre for Longitudinal Studies at UCL.

      We are working with a company called Thriva, who are a blood testing company. Your name and address will be passed to Thriva so that they can send you a kit. They will destroy this information once your kit has been posted. The blood test kit will be returned to Thriva for analysis and the result of your test will be provided to the Next Steps team. Thriva will 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 are also working with Kantar Public, the organisation that has been conducting our COVID-19 Surveys on our behalf. Kantar Public have emailed you to invite you to take part in this research and will also send 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 give?
    • 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 is left over after the antibody test has been conducted will be 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.

  • I’ve received the blood collection kit in the post, but I no longer wish to take part. Do I need to do anything?
    • If you decide you do not want to take part, simply throw away the testing kit as set out in the test instructions which came with it. There is no need for you to let us know that you will not be taking part.  We may send you a reminder to return the kit, but you can ignore this.

  • What if I change my mind after giving a blood sample?
    • You can contact us at nextsteps@ucl.ac.uk or 0800 977 4566.

      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 is left over after the antibody test has been conducted will be destroyed by the laboratory.  None of your blood will be stored for future use.

COVID-19 Survey

  • What is the COVID-19 Survey?
    • We are asking study members to complete a series of short questionnaires about their experiences during the coronavirus outbreak.  The first survey took place in May and the second in October. We are now inviting you to take place in the third survey.

      The surveys provide study members with an important opportunity to contribute to our national understanding of how the coronavirus is affecting the economy, society, and health.

  • What does it involve?
    • We will contact you by email to invite you to complete a short online questionnaire. It should only take around 25 to 30 minutes.

      The questionnaire covers the impact of the coronavirus outbreak on your work, your health, your family and your social life.

      We will ask you to do this at regular intervals throughout the outbreak to see how things change for you. The data will be more valuable the more often you take part.

      Answering these questionnaires is voluntary and you can skip over any questions that you cannot or would prefer not to answer.

      To say thank you we will send you a gift voucher each time you take part.

  • How do I claim my gift voucher?
    • To claim your gift voucher please visit:  https://kantarincentives.perksplus.com/ and enter your 20 character voucher code.

      – If you have previously claimed a voucher for taking part in one of our COVID-19 Surveys you can log in to the account you set up, select Redeem Another Incentive Code and then enter your voucher code.

      – If you have not previously claimed a voucher or have forgotten your details then you can set up a new account by entering your voucher code followed by a few personal details.

      You will be able to choose between an electronic Amazon voucher, an electronic Love2Shop voucher or a physical Love2Shop gift card.  If you choose an electronic voucher it will be emailed to you.  This may take up to 5 days.  If you choose the physical Love2Shop gift card you will need to enter your address and it will be posted to you.  This could take 4-6 weeks.

      If you have any difficulties or queries you can contact Kantar on Freephone 0800 051 0889 or cohortcovidsurvey@kantar.com.

  • Why it is important?
    • The coronavirus outbreak has led to big and sudden changes in how we live our day-to-day lives in the UK. It is a serious and unprecedented event. It will have a lasting impact on many people’s lives.

      The answers you give will help researchers understand the impact of the outbreak on people’s lives, and will provide vital evidence on how the lives of people affected can be improved.

      The information you have given in previous surveys will greatly improve our understanding of the impact of the outbreak. And as we will be following your lives into the future we can also look at longer-term consequences. For these reasons, your contribution is particularly valuable.

  • Do I have to take part?
    • Like all of our surveys, it is completely up to you whether or not you choose to take part in these coronavirus online surveys.

      We will be carrying out the survey at regular intervals during the outbreak. You can choose to take part in some, all or none of these surveys. Taking part in one survey doesn’t mean you have to take part in later ones.

      We understand that some people may not want to or be able to take part in surveys at this time.

      This does not affect your participation in the main surveys for the study.

  • Can I take part in the latest COVID-19 Survey if I didn’t take part in previous surveys?
    • Yes, absolutely.  We are now inviting you to take part in the third COVID-19 Survey. We would love you to take part, regardless of whether you took part in the first or second survey last year.

  • How will I access the questionnaire online?
    • You will receive an invitation by email and by post.

      The easiest way to access the questionnaire will be to click the link in your email invitation.  You will then be asked to enter your date of birth and then you will be able to proceed.

      If you do not receive an email you can access the survey by visiting www.cohortcovidsurvey.com.  You will need to enter the Unique ID and Password which you will find in your invitation letter and will then be asked to enter your date of birth.

  • How do I complete the questionnaire online?
    • You will receive an invitation by email and by post.

      The easiest way to access the questionnaire will be to click the link in your email invitation.  You will then be asked to enter your date of birth and then you will be able to proceed.

      If you do not receive an email you can access the survey by visiting www.cohortcovidsurvey.com.  You will need to enter the Unique ID and Password which you will find in your invitation letter and will then be asked to enter your date of birth.

      You can complete the question using a PC, laptop, tablet or smartphone. You can decide which one you would prefer to use.

      We recommend you complete it all in one go. It should take around 25 to 30 minutes to finish. However, if that’s not possible, you can leave it and come back, using the same login details.

      As always, answering these questions is voluntary and you can skip over any questions that you cannot or would prefer not to answer.

      If for any reason you can’t complete the survey online, one of Kantar’s interviewers may contact you by telephone and you will be able to complete it over the phone.

  • Can I still take part if I have not received an email or letter?
    • Yes, of course. If you haven’t received an email or letter inviting you to take part, this is most likely because we don’t have up to date contact details for you. If you would like to take part, please use the contact form to provide us with your email address and we will include you in future coronavirus surveys.

  • How can I opt out of the coronavirus surveys?
    • If you want to opt out of receiving the coronavirus surveys, you can do this either by clicking on the unsubscribe link at the bottom of your invitation email or by contacting Kantar, the organisation who are conducting the surveys on our behalf.  You can email them at cohortcovidsurvey@kantar.com or call them for free on 0800 051 0889.

      This won’t affect your participation in the main surveys.  

  • 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.

  • Who should I contact if I have any problems, queries or concerns?
    • If you have any problems, queries or concerns, please contact Kantar, the organisation who are conducting the surveys on our behalf.  You can email them at cohortcovidsurvey@kantar.com or call them for free on 0800 051 0889.

  • 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 Next Steps 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

Why am I unique?

  • Why are Next Steps 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 follow your lives to understand and learn from your special generation.

      The world around you has been changing fast. You’re the last generation to remember life without broadband, tablets and mobile phones. And since you were born, scientists have mapped the human genome, there have been space missions to Mars, Jupiter and Saturn, and gay couples can now adopt, marry and share pensions in the UK.

      While your generation has grown up at a time of great technological, scientific and social advancement there have also been great challenges, like the global economic recession, climate change and international security. We want to know what this means for your generation who are in the process of finding work, somewhere to live, and possibly starting a family of your own?

      You’ve been specially chosen to be the voice of your generation. You are one of 16,000 people selected to represent your generation. Each and every one of you brings something unique to the study, and together, you represent the diversity of the Next Steps 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 should I take part?
    • By taking part in Next Steps, 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. Find out more about how the study has made a difference.

      It’s your story and only you can tell it. Next Steps has been following you since you were in Year 9 at school, aged 13/14 and we really want to continue following your adult lives.

      You’re unique and irreplaceable. If you choose not to take part, we can not 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 Next Steps generation.

  • How was I initially recruited?
    • Next Steps follows the lives of around 16,000 people born between 1st September 1989 and 31st August 1990.

      You were originally recruited to the study in 2004 when you were in year 9 at school. Your school was selected at random from all independent and maintained secondary schools and pupil referral units in England and your name was then randomly selected from all the pupils in Year 9 attending your school in February 2004.

      Over 21,000 pupils from 647 participating schools and referral units across England were originally approached to take part in Next Steps.

      At that time, the Department for Education and Skills (later known as the Department of Education) wrote to you and your parents/guardians to tell you about the study and to invite you to take part in the first survey. 15,770 families were interviewed in the first survey in 2004.

      A further 352 pupils were added to the study in 2008 to ensure that the study included enough young people of different ethnicities.

      In total, 16,122 young people were recruited to the study.

  • Who else takes part?
    • More than 16,000 people have taken part in Next Steps since it started.

      As you were growing up, your parents or guardians may also have taken part in the study as well. So, in fact, nearly 30,000 people have been involved in Next Steps in one way or another.

      At future surveys, we may want to talk to other important people in your life, such as your partner or children (if you have them). But it will be up to them to decide whether or not they want to take part.

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 Next Steps 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. When you were growing up, Next Steps surveys took place every year because your lives were changing so quickly. Now that you are older, we will visit you less often.

      The most recent survey was in 2015 when you were 25. We hope to continue to get in touch with you at particular ages throughout your adult life. These ages are specially chosen to mark key points in your lives that are interesting or important. The timing for future surveys has not yet been decided. But it is likely that future surveys will take place every 3-5 years.

      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.

      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 between surveys, it would be very helpful if you could contact us with your new address.

  • How long will the study continue?
    • We hope that the study will continue throughout your life. Other similar studies, which started in 1946, 1958, 1970 and 2000/1 are still going on today.

  • 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 Next Steps 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‘ page.

  • 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 in the next survey. 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.

  • Should I tell other people I am part of Next Steps?
    • 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.

  • Why did Next Steps move to the Centre for Longitudinal Studies?
    • Next Steps was transferred to the Centre for Longitudinal Studies (CLS) in 2013 from the Department for Education (DfE), who had run the study since it started in 2004. At the same time, the Economic and Social Research Council (ESRC) took over funding of the study.

      DfE wrote to all study members to tell you about the transfer, and give you the opportunity to opt-out of your details being passed to CLS. The letter and leaflet they sent to you are available in the resources section.

      ESRC decided to pay for Next Steps to continue because it is the only major study following the lives of your generation. They asked CLS to manage Next Steps as we have lots of experience running similar studies.

Keeping in touch

  • What sort of information will you send me?
    • We will write to you regularly with updates about Next Steps, to make sure you know what is coming up, what we’ve learned and how the study has made a difference.

      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.

      You can also follow us on Twitter and Facebook to keep up to date with the study.

  • How do I find out the results from Next Steps?
    • 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.

      Follow us on Twitter and Facebook to keep up to date with the latest news.

  • 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 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 to do is either call us via the Freephone telephone number (0800 977 4566), or email us at nextsteps@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 send you an online survey or a paper form which will ask you to confirm or update the contact details we hold for you.

  • Can I keep in touch with Next Steps on social media?
    • Next Steps is now on Facebook and Twitter so it’s easy for you to keep up to date with the study.

      Facebook

      You can keep up to date with Next Steps by liking our Facebook page: www.facebook.com/nextstepsstudy.

      Only your Facebook friends will be able to see that you’ve liked our page, and we’ve disabled the comment function to protect your identity from others.

      Twitter

      Next Steps is also on Twitter. You can follow us at @nextstepsstudy.

      Other people will be able to see your Twitter name listed under our followers. If you reply to one of our tweets, only the people who follow you will be able to see it.

      Contact us by email, phone or post

      If you have a question or comment about the study, please contact us by email, phone or post and not through Facebook or Twitter. Find out how to reach us on the contact us page.

      Find out about keeping safe online.

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 Next Steps continues to represent the diversity of your generation. So, if we find out that you’ve moved, we will try to find out 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 you have given us details of your social media profiles, we may also try to contact you by sending you private messages via social media.

      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 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 Next Steps.

  • 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.

      Next Steps has also tried to trace study members using using the National Pupil Database and the Individualised Learner Record held by the Department for Education.  The National Pupil Database contains the addresses of all state school pupils in England, which are collected through schools. The Individualised Learner Record collects information on learners and their learning at further education colleges, sixth form colleges, independent learning providers and voluntary and community organisations in England.  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 the internet and social media to find us?
    • Sometimes we try to find study members using publicly available information on 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.

      If you have given us details of your social media profiles, we may also try to contact you by sending you private messages via social media.

  • 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 977 4566), or email us at nextsteps@ucl.ac.uk. Your call and/or email will be treated in the strictest confidence.

  • 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 977 4566), or by email (nextsteps@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 the UK.

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

Privacy and data protection

  • How will my personal information be used?
    • We try to keep your personal details up to date so that we can keep in touch with you, for instance to send you information on how the data you provide to us in the survey is being used by researchers, and so that we can contact you during each survey.

      Each time you complete a survey you are asked to confirm or update your personal details. Between major surveys, we may ask you to confirm or update your personal details through a short online survey or using a paper form.

      We hold your personal details (your name, full address, telephone numbers, email addresses, etc) in a secure and restricted administrative database, to which only a small number of authorised staff have access. We never make these personal details available to researchers or to any third parties who might use them for marketing purposes.

      – We send updates to you to keep in touch, and we use external mailing companies for this. We send them your contact details securely, using an encrypted online portal, to enable them to send out mailings to you.

      – The surveys that you take part are conducted by external organisations contracted by us. NatCen Social Research was the independent research organisation that was contracted to carry out the Age 25 Survey, on behalf of the Centre for Longitudinal Studies at University College London. Kantar are conducting the COVID-19 Surveys.  We send them your contact details securely, using an encrypted online portal, to enable them to approach you to take part. Once the survey has been completed, they return us your responses securely, also using an encrypted online portal.

      – When we receive your survey responses, your information is split into two parts for storage at the Centre for Longitudinal Studies (CLS). Your personal details are removed from the survey responses that you provide. Your survey responses are held on a separate secure research database. They do not contain any personal details, and are held together with the survey responses from thousands of other participants. This research data is then deposited with the data stores used by CLS. The deposited research data does not contain any personal details that would enable you to be identified at individual level. It is made available to researchers who must register with the relevant data store and must work under a strict licence agreement.

      – If you agree to take part in the COVID-19 antibody testing project, we will provide your name and address to Thriva, the blood testing company that we are working with on this project, so that they can send you a blood collection kit. This information will be supplied via a secure online portal. Thriva will destroy the file containing these personal details once the blood collection kits have been posted.

      In our surveys we sometimes ask you to describe your experiences in your own words. Your responses are included in the survey data that we make available for research (as described above). They may also be used in communications about the research and study data. As with all the information you share with us, your responses to questions like these are de-identified before anyone can use them. You may be able to recognise your own responses, but other people will not be able to identify you through your responses.

      The personal information you provide us will not be used to make any decisions (automated or otherwise) which could affect you in any way – it will only be used for research purposes.

  • Who receives my personal data?
    • We share your personal data with those external organisations we have contracted to either carry out our surveys, or send you mailings between each survey. NatCen Social Research was the independent research organisation that was contracted to carry out the Age 25 Survey, on behalf of the Centre for Longitudinal Studies at University College London.  Kantar are conducting the COVID-19 Surveys. We use external companies to carry out the mailings between each survey.

      If you agree to take part in the COVID-19 antibody testing project, we will provide your name and address to Thriva, the blood testing company that we are working with on this project, so that they can send you a blood collection kit. This information will be supplied via a secure online portal. Thriva will destroy the file containing these personal details once the blood collection kits have been posted.

      These external organisations are contractually bound to UCL to keep your data safe and secure, and are accredited to data security standards. The organisations we contract may appoint sub-contractors to send you letters, emails or text messages. Sub-contractors will always be contractually bound to comply with data protection law.

  • How do you keep my data secure?
    • We go to great lengths to maintain your privacy. We respect that you have voluntarily given information to us on the basis that we protect your rights. We keep any information which could identify you in a secure location.

      At the Centre for Longitudinal Studies (CLS), the study data is managed by two different teams, all of whom have signed strict confidentiality contracts and can only access this information for limited purposes. One team deals with your personal contact information to make sure we are able to stay in touch with you. The other manages all the other information you provide in the survey. Neither team has access to both.

      The organisations which carry out the surveys are also contractually bound by very strict confidentiality and data security agreements.

      The collected survey responses are made available to the research community through the data stores used by CLS. This research data does not contain any personal details that are identifiable at individual level. The data is only made available to researchers who register with the relevant data store, and they must work under a strict licence agreement. No-one using the data will know who the information has come from, or who is in the study.

  • How long will you hold my data for?
    • The purpose of Next Steps is to understand the whole picture – of your lives individually, and of your generation as a whole. The aim is to follow your whole life’s journey. For this reason, we have not set a time limit for how long we will keep your data. This applies to both data collected in the surveys and any data linked in to your survey data. It is very important for us to keep your data safe.

  • Can I access the data I have provided to the study?
    • Under data protection legislation you can get a copy of the information you gave to the surveys. Everyone has the right to access any personal data that is being kept about them. You can do this by making what is known as a subject access request. You should send your request to nextsteps@ucl.ac.uk

      Additionally, you can download the study data from UK Data Service by registering and signing the special confidentiality contract. However, unless you are a professional researcher the data may be difficult to understand as they are in a complex format. And you won’t be able to identify yourself as the data are de-identified.

  • Are my contact details transferred to other countries?
    • Your contact details are not transferred outside the European Economic Area (EEA), to ensure that they are protected by the strong EEA data protection laws.

  • How do I withdraw from the study?
    • You have the right at any time to withdraw from the study.  Information which the study has already collected about you in the past will be retained.  You will not be invited to part in any future surveys and we will not contact you for any other reason.   We will keep your contact details as a historic record that you were once a member of the study.

      If you wish to withdraw from the study you can let us know in various ways:

      Call: 0800 977 4566
      Email: nextsteps@ucl.ac.uk
      Post: Next Steps, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London WC1H 0AL

  • How many people have used the data?
    • There are lots of researchers who analyse the data from Next Steps every year. Anyone using the data needs to sign a special confidentiality contract which states that they will only use it for research.

  • What is GDPR?
    • The General Data Protection Regulation – https://www.eugdpr.org/, sets out our duties and responsibilities when we process and use your personal data. GDPR was approved by the European Parliament on 14th April 2016 and came into force on 25th May 2018. Because the GDPR is a regulation, it is directly binding and applicable. The new Data Protection Bill (2018) brings the GDPR into British law, and is part of the Data Protection Act 2018.

  • How does GDPR affect Next Steps?
    • Next Steps collects personal data from you, so it needs to be compliant with GDPR, which sets out the duties and responsibilities we have to you, and your rights regarding the personal data that we hold and process.

      The study is managed by the Centre for Longitudinal Studies (CLS), which resides at University College London (UCL). UCL is the ‘Data Controller’ for this study. We contract with different external organisations who carry out our surveys on our behalf.  These organisations act as ‘Data Processors’. For the last Age 25 Survey, the fieldwork was contracted to NatCen Social Research. We use external mailing companies to post study updates to you between each survey, and they also act as a data processor.

      The study is funded by the Economic and Social Research Council (ESRC). The aim of the study is to generate data for research purposes and its funders and UCL are Public Authorities/ Bodies – this is regarded as a ‘Task in the Public Interest’ under GDPR – and is the lawful basis on which we are permitted to process your personal data.

      In addition, we comply with all the relevant legislation on protection of confidentiality. We have received externally certified accreditation to the NHS Digital Information Governance Toolkit standard, which allows us to hold data from the NHS, and which also provides you with assurance that your data is secured and protected in the strongest possible manner.

  • What is the legal basis on which you can process my personal data?
    • Next Steps is funded by the Economic and Social Research Council (ESRC). The aim of the study is to generate data for research purposes and its funders and UCL are Public Authorities/ Bodies – this is regarded as a ‘Task in the Public Interest’ under GDPR – and is the lawful basis on which we are permitted to process your personal data.

  • Who is the Data Controller?
    • 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).

  • Who is the Data Protection Officer?
    • If you want to request further information about our privacy notice you may contact the University College London Data Protection Officer through data-protection@ucl.ac.uk

  • Is this Privacy Notice likely to change?
    • At CLS we will keep our privacy notice under regular review and it will be updated at least annually.

      If you want to request information about our privacy notice you can contact us via the details on our website https://nextstepsstudy.org.uk/ or via our Data Protection Office at data-protection@ucl.ac.uk

  • How do I make a complaint?
    • If you wish to raise a complaint or a cause for concern in relation to the study you can get in contact with us in a range of ways:

      Call: 0800 977 4566
      Email: nextsteps@ucl.ac.uk
      Post: Next Steps, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London WC1H 0AL

      If you are concerned about how your personal data is being processed, you can contact the UCL Data Protection Office at: data-protection@ucl.ac.uk. If you remain unsatisfied, you may wish to contact the Information Commissioner’s Office (ICO). Contact details, and details of data subject rights, are available on the ICO website: https://ico.org.uk/

  • Why do you need to know about “Stable contacts”?
    • We ask you to give us contact details for your partner (if you have one) and someone who you don’t live with (e.g. a relative, a neighbour, a friend) so that we can get in touch with them if we are unable to contact you directly e.g. if you’ve moved house. We refer to these people as ‘Stable Contacts’ and we only hold the contact details of these other people for that purpose – and this is the only reason we would contact them. You should let them know that you have given their details to us.

  • 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.  However, whilst no personal information relating to your family members is included in the data made available to researchers, you should let these family members know that you have given their details to us.

       We also ask for your partner’s contact details so that we can get in touch with them if we are unable to contact you directly e.g. if you’ve moved house.  We only hold your partner’s contact details for that purpose – and this is the only reason we would contact them. You should let them know that you have given their details to us.

Adding other information

  • Do you add any other information to my data?
    • Government departments and agencies hold information about people, which they use for routine 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 Next Steps even more valuable as it means researchers can use it to answer even more questions about society.

      When you first joined the study, your parents gave permission to add information from your school records to the survey data. As part of the Age 25 Survey, we asked for your permission to add information from a number of other administrative records. Find out more about this in the information booklet about data linkage, titled ‘Adding Other Information About You‘.

      To add other information to your data, if you have given us permission, we will send securely 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 their answers to the surveys. The government bodies or agencies only use these details to identify the records in their systems and then send us 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: Next Steps, UCL Social Research Institute, 20 Bedford Way, London, WC1H 0AL, or by emailing the team at nextsteps@ucl.ac.uk.

      We also add mortality data – 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 the NHS Digital Data Access Advisory Group.

      We also add information, which is not about you individually, but is about, for example, the school you went to or the area you live in. Any information like this provided to researchers is de-identified and cannot be used to find out who is in the study.

      Watch our video to find out more about adding other information.

       

  • What 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 to 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 the NHS Digital Data Access Advisory Group.

      When you first joined the study, your parents gave permission to add information from your school records to the survey data. As part of the Age 25 Survey we asked for your permission to add information from your health, education, work and benefits records, as well as any police and criminal justice records you may have. We have already started adding some information from these records to the information we have collected about you as part of the survey.

      Find out more about the information that we have added below:

      –    Information added from routine education records

      At the start of the study, your parents gave permission to add information from your school records, kept by the Department for Education (DfE), to the survey data. At the Age 25 Survey, we asked you if we could add to the survey data, information from your further and higher education records, held by the Department for Education (DfE), the Higher Education Statistics Agency (HESA), the University Colleges and Admissions Services (UCAS) and the Student Loans Company (SLC).

      We have already added some information about your performance at school (up to age 16) and have made this information available to researchers under restricted access arrangements. We have also added information from your further education (up to age 19) and are preparing it for deposit with the relevant data store, but we have not yet added information from your higher education records.

      These records, combined with the information you’ve given during the surveys, will allow researchers to better understand your experiences during and after leaving school, and can help provide better education and training opportunities.

      –    Information added from routine health records

      At the Age 25 Survey, we also asked you 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.

      We are now starting to get some information about your health. For example, we have already added some information from your hospital records.

      For those of you in England, NHS Digital hold all hospital admissions and outcomes data from the Hospital Episode Statistics (HES) dataset, and we have linked this information for individual participants in the study, who have consented to this. We will make this linked information available to researchers under restricted access arrangements.

      For those of you in Scotland and Wales, your medical records are held by the Information Services Division (ISD) of NHS Scotland and NHS Wales. As very few of you live in Scotland and Wales, we do not plan to link this data at present.

      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 information you’ve 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 economic records

      At the Age 25 Survey, you have been asked for permission for your economic records to be added. This includes information about benefits, employment, earnings, tax credits and occupational pensions, and national insurance contributions.

      We are now in the process of adding this information from your economic records, kept by the Department for Work and Pensions (DWP) and by Her Majesty’s Revenue and Customs (HMRC). This information will give us a better picture of your economic circumstances without asking additional questions in the interview. It will help researchers understand how your generation is managing in this difficult economic climate.

      –   Information added from criminal records

      As part of the Age 25 Survey, we also asked for your permission to add information from any police and criminal justice records you may have, kept by the Ministry of Justice.

      We have not yet collected this information, but we are intending to add some information from these records in the near future.

  • 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. This applies for the permissions that your parents have given on your behalf in the past. 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: Freepost RTHR-TUGG-UTCR, NEXT STEPS, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way London WC1H 0AL, or email the team at nextsteps@ucl.ac.uk.

  • Who will use the linked survey and administrative information
    • The linked administrative and survey data will be made available to researchers and policy makers via the UK Data Service for research purposes only. Researchers will only be given permission to use the data after successful application, assessed and approved by CLS (or jointly by CLS and the respective government department or agency – depending on the agreed conditions of access). This is to ensure that the information will be used responsibly and safely, presents a strong scientific case and explains the potential impact of the research and its wider value to society.

      Your name, addresses, National Insurance number and NHS number are never included in any data made available to researchers via the UK Data Service, which ensures that no individual can be identified from the data or the research findings. All information collected by and added to Next Steps is treated with the strictest confidence in accordance with the Data Protection Act 1998 and the General Data Protection Regulation (GDPR).

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.

  • 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 Next Steps.

  • 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 Next Steps which follow participants over time. At the Centre for Longitudinal Studies (CLS), we run four studies – the 1958 National Child Development Study, the 1970 British Cohort Study, 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, 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.

  • 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. 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 Next Steps. 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 cohort study?
    • A 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. Next Steps is a cohort study following people born between 1 September 1989 and 31 August 1990.

  • Why are cohort studies so valuable?
    • Our society is changing fast. Findings from 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 and updating breast feeding advice given to parents.