Adding other information

What is “adding other information”?

Government departments and agencies hold information about us which they use for routine administrative purposes. From time to time, we add information from these routine administrative records to the information you have given us as part of the study.
In the Age 25 Survey in 2015 we asked you for your permission to add information from the following records to the information you have given us in surveys over the years:

  • Health records held by the NHS
  • Education records held by the Department for Education (DfE), Universities and Colleges Admissions Service (UCAS), and the Student Loans Company
  • Economic records held by the Department for Work and Pensions (DWP) and Her Majesty’s Revenue and Customs (HMRC)
  • Police and criminal justice records from the Ministry of Justice (MoJ).

As part of the Age 32 Survey, we will ask you for any permissions not previously given.

If you live with a partner, we will also ask their permission to add health and economic information from their records.

We will send you a booklet which explains more about this. Please take the time to read it and make your decision.

You can also find out more by watching our video.

What information about me do you want to add?

With your permission we would like to add information from the following 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.

Education records:

Department for Education (DfE)
These records include information on the schools you went to and educational needs you may have had while attending these schools.

Universities and Colleges Admissions Service (UCAS)
UCAS holds records about you if you applied to any higher education institutions such as a university. This will include where you applied to and whether that institution offered you a place.

Student Loans Company
The Student Loans Company hold information about the funding you applied for and received for your higher education, and the repayments you have made since.

Economic records:

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 records of everybody’s employment, earnings, tax credits and occupational pensions (since 1998) and National Insurance Contributions.

Criminal records
The Ministry of Justice (MoJ) hold records on arrest, cautions, convictions and sentencing.

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 questionnaire, but this information is fairly limited in scope. The information recorded in your medical records is based on confirmed diagnoses by medical professionals. However, medical records may not be entirely complete as they will not include details about problems that have not been reported to a doctor.
Combining information from the questionnaire 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?

Education records
Since Next Steps began, we have collected information about your experience in education. Some information that is scientifically important to researchers is too detailed to be asked in a single survey. The information held by the Department for Education, UCAS, and the Student Loans Company contains this level of detail and enables researchers to look into a wider range of questions.
Adding this information will allow researchers to examine questions such as:

  • How do tuition fees and student debt impact employment, income and standards of living?
  • How do qualifications affect earnings in later life?

Economic records
Over the years we have collected information about you and your family’s economic circumstances. The information you have provided has allowed researchers to examine a whole range of issues such as the financial benefits of education and training, and the importance of 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 benefits and welfare to work programs.
It is very difficult to collect sufficiently detailed information about tax credits and benefits in the surveys, 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 such as:

  • How much does education and training boost people’s income over their lifetime? And how much does this depend on their family background?
  • How well prepared are millennials for retirement and how does this vary by socio-economic background? How does this compare to other generations?
  • Have government welfare to work programs over the last 15 years worked and if so for whom?

Police and criminal justice records
Adding information from police and criminal justice records to the Next Steps data will help researchers and policymakers to understand much more. Researchers can look into whether aspects of life such as home, school, neighbourhood and peer groups affect how likely, or unlikely, people are to have contact with the police or to commit crime. Policymakers can use this understanding to develop and focus future crime prevention policies. This is important as it affects all of us, in one way or another. Allowing Next Steps access to this information enables researchers to investigate questions such as:

  • How does contact with the police or being convicted of a crime affect people’s futures?
  • What factors affect the likelihood of an individual committing different types of crime?

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

 

Why are you asking for my partner’s consent?

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 you answer the questionnaire, so adding information from their records will give us a much better understanding of your household circumstances.

 

Can you give me some assurances?

  • The information cannot and will not be used to identify the 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 Next Steps.
  • No directly identifiable personal information (e.g. name and address) 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 research judged to be in the public interest.
  • 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
  • DfE, UCAS, and the Student Loans Company
  • the MoJ (or to a trusted third party employed by the government departments or agencies).

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. They will use your personal details to identify the correct records. They 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 government departments and agencies 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 departments 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 Next Steps, 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 the information?

The information will be made available to researchers under restricted access arrangements via the UK Data Service (UKDS) or similar organisations. 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 give now relate to the permissions I have given in the past?

As part of the Age 32 Survey, we will only ask about permissions which you have not previously given.
The permissions you give now will supplement the permissions you gave at the Age 25 Survey. Any permissions will remain valid unless they are withdrawn.

 

Can I give permission on my partner’s behalf?

The information from your partner’s records is very important for us as it will give us a much better understanding of your family and household circumstances. However, giving us access to this information is your partner’s personal decision.

If your partner is 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 information from administrative records’ 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 the records that you ask 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 I agreed to add?

We will send you an email (or letter if requested) after your interview which will outline the permissions you have given. You can also call the Next Steps study team to confirm this.

 

How long will the permission last?

The information we would like to 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.

 

Can I change my (or my partner’s) permissions?

You can withdraw permission at any time for your (or your partner’s) records to be added to your study answers without giving us a reason. This applies for any permissions that you (or your 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 Next Steps team at nextsteps@ucl.ac.uk or write to: Next Steps, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London, WC1H 0AL.

 

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 with their contact details.