Privacy notice for the Individual Placement and Support for Alcohol and Drug Dependence trial
Published 28 January 2022
Applies to England
© Crown copyright 2022
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This publication is available at https://www.gov.uk/government/publications/individual-placement-and-support-ips-ad-trial-privacy-notice/privacy-notice-for-the-individual-placement-and-support-for-alcohol-and-drug-dependence-trial
Summary of the IPS-AD trial
Individual Placement and Support (IPS) supports people with health conditions into paid employment. Between 8 May 2018 and 31 March 2021, Public Health England (PHE) ran a randomised controlled trial of IPS in community alcohol and drug treatment services. The study is called Individual Placement and Support for Alcohol and Drug Dependence (IPS-AD).
The trial took place in 7 local authority areas, and involved adults in drug or alcohol treatment who were currently unemployed or economically inactive.
The trial monitored several outcomes, including:
- employment
- changes to tax, National Insurance paid and benefits claimed
- health status
- severity of drug or alcohol dependence
- treatment outcomes
- use of hospital services
- crimes committed
- mortality
In October 2021, the team that ran the trial transferred from PHE to the Office for Health Improvement and Disparities (OHID) in the Department of Health and Social Care (DHSC).
Consent for using your data
If you took part in the IPS-AD trial, you were told about the information we collect and how we will use it. We also asked you to give your informed consent after reading participant information.
Why we collect your data
We collect your data to carry out analysis of the different outcomes that the IPS-AD trial monitors, which are listed above. The analysis will look at the changes in these outcomes as you went through the trial.
What data we collect
DHSC is the data controller of the trial data. This means that DHSC has overall control over what is done with the data.
We will collect data about individual participants in the IPS-AD trial from several sources, as outlined below.
Personal data
We will collect the following types of personal data about you:
- name
- postcode
- date of birth and age
- National Insurance number
- NHS number
- job title
Special category data
We will also collect special category data, which is personal data that needs more protection because it’s sensitive. The special category data we use is information about:
- your treatment for alcohol or drug use
- your health status and severity of dependence on alcohol or drugs
- your ethnic origin
- your employment start and end dates
- how much income tax and National Insurance you have paid
- your social security benefits data
- any criminal convictions and sentences you have
- your use of hospital services
You can read more about special category data at the Information Commissioner’s Office website.
Sources of your data
We collect data about you from different sources. These include:
- drug and alcohol treatment data from the National Drug Treatment Monitoring System held by DHSC
- trial randomisation data from the King’s College Clinical Trials Unit
- information from IPS teams about how you have worked with the IPS teams
- data about any participant deaths from the Office for National Statistics
- data about your hospital use from NHS Digital
- data about any criminal convictions and sentences from the Ministry of Justice
- data about your employment start and end dates, as well as tax and National Insurance you have paid, from Her Majesty’s Revenue and Customs (HMRC)
- data about your benefit claims and contact from the Department for Work and Pensions (DWP)
The legal basis for processing your data
Data protection legislation requires us to have a valid legal reason to process and use personal data about you. This is often called a ‘legal basis’.
UK General Data Protection Regulation (UK GDPR) requires us to be clear with you about the legal basis we rely on to process information about you. The legal bases we rely on for processing this information are from GDPR articles 6 and 9:
processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller” Article 6(1)(e)
the processing is necessary for reasons of public interest in the area of public health (for example, ensuring the safety of medicinal products)” Article 9(2)(i)
the processing is necessary for archiving purposes in the public interest, for historical, scientific, research or statistical purposes, subject to appropriate safeguards” Article 9(2)(j)
Who your data will be shared with
Your information is likely to be shared within the project team. However, only people who are trained and work using a secure system will see any information that could identify you as a participant.
Most personal information used in research will have your name removed before sharing more widely, and all of it will have identifying information removed before publishing the research findings.
We need to share some information with other government departments and other organisations to help us to track the outcomes we are interested in. These are:
- Department for Work and Pensions
- Her Majesty’s Revenue and Customs
- Ministry of Justice
- King’s College London Clinical Trials Unit
- RAND Europe and the Centre for Mental Health, if you have given specific consent for us to share data with these organisations
How long we keep your data
We will not keep your information for longer than necessary. We will keep trial data for 6 years from randomisation. You should have already been told this on the participant information sheet you got at the start of the trial.
After 6 years, DHSC will securely delete all identifiable data.
The other organisations involved in the trial all have their own time limits for keeping data, which you can find out about from each organisation.
How we protect your data and keep it secure
DHSC securely protects the information it holds and has dedicated storage areas for research data, which have controlled access. There are also comprehensive policies and processes to make sure that users and administrators of DHSC information know their obligations and responsibilities for the data they have access to.
Our partners at DWP, HMRC, the Office for National Statistics, NHS Digital, RAND Europe, the Centre for Mental Health and King’s College London Clinical Trials Unit all have similar measures in place. They are used to working with sensitive personal information and keeping it safe.
There are no international transfers of IPS-AD data. All data is stored on hard drives located in the UK or servers located in the UK.
Your rights
By law, you have a number of rights and processing your data does not take away or reduce these rights, under the UK General Data Protection Regulation and the UK Data Protection Act 2018.
You have the right to:
- ask for and receive copies of information about you
- get information about you corrected if you think it’s inaccurate
- limit how your information is used – you can ask for it to be restricted, for example if you think it’s inaccurate
- object to your information being used
- get information deleted
Some of these rights might not apply when the data is being used for research. We will let you know if this is the case.
There are also some circumstances in which we cannot delete your data. For example, if it has been anonymised and we cannot tell which data relates to you.
Contact us or make a complaint
We will always try to respond to concerns or queries that you have about your data.
If you are unhappy about how your personal data is being used, or if you want to complain about how your data is used as part of this programme, you should email [email protected] or write to:
Data Protection Officer
1st Floor North
39 Victoria Street
London
SW1H 0EU
If you are still not satisfied, you can complain to the Information Commissioner’s Office (ICO). You can find out how to contact them at the ICO website. Their postal address is:
Information Commissioner's Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Questions about the IPS-AD trial
If you want further information about the IPS-AD trial, please contact us at [email protected].
Changes to this privacy notice
This privacy notice is kept under review and will be updated if necessary. All updated versions will be marked by a change note on this notice’s publication page.