Below is the Privacy Notice for the MODIFY Project.
This privacy notice relates to the MODIFY research project run by researchers at University College London. UCL is the data controller for the MODIFY project, which means that UCL hold the data for this project. The project is funded by the Alzheimer’s Society and the two researchers leading the projects are Dr Joshua Stott and Professor Marcus Richards.
INTRODUCTION AND OVERVIEW
PURPOSES FOR WHICH DATA ARE PROCESSED
The MODIFY project aims to enhance understanding of dementia prevention in the UK by examining the role of psychological therapies offered within the England wide Improving Access to Psychological Therapies services in dementia prevention. In order to do this UCL are statistically analysing pseudonymised data (data that have been made hard to identify by removing personal information) detailing IAPT psychological therapy outcomes and dementia status over a period of years.
THE LAWFUL BASIS FOR PROCESSING
Given the import of initiatives to prevent dementia and the importance of research into this, these data are lawfully processed in the public interest under the data protection act 2018 articles 6e and 9j.
WHAT PERSONAL DATA ARE BEING PROCESSED?
Data processing is at the level of the individual patient (that is record level data). We have removed any identifiable data (Date of birth, NHS number, name, postcode) and thus the data is classified as pseudonymised and we will not be able to identify any individuals in the data we are processing. In order to meet our main aim of understanding psychological therapy for mental health can reduce later risk of dementia and also possibly other adverse health outcomes, we will be processing sensitive data as to mental and physical health conditions. Since it is also important to know who might benefit most from IAPT therapies in terms of dementia prevention, we will also be collecting sensitive information on gender and ethnicity. As stated above, while we are processing these sensitive data items we will not be able to identify any individuals in the dataset.
WHAT WAS THE SOURCE OF THE DATA?
NHS digital collect data from hospitals and mental health services nationally. They provided the data for use in MODIFY to UCL researchers in Dr Stott and Prof Richards' team who will have access to the data.
WHO WILL HAVE ACCESS TO THE DATA?
Only researchers involved with the MODIFY project, all of whom are researchers employed by UCL will have access to these data. There will be no transfer of these data outside of UCL.
HOW LONG WILL THESE DATA BE RETAINED?
The data will only be retained for as long as they are necessary to answer the research questions posed by MODIFY.
THE RIGHTS AVAILABLE TO INDIVIDUALS IN RESPECT OF THE PROCESSING
These rights are detailed on the UCL privacy notice for participants in health and social care which can be found here (https://www.ucl.ac.uk/legal-services/privacy/participants-health-and-care-research-privacy-notice)*
Under data protection legislation you have individual rights in relation to the personal information we hold about you. For the purposes of research where such individual rights would seriously impair research outcomes, such rights are limited. However under certain circumstances, these include the right to:
access your personal information
correct any inaccurate information
erase any person information
restrict or object to our processing of your information
move your information (portability)
It is important to understand that the extent to which these rights apply to research will vary and that in some circumstances rights may be restricted. If it is considered necessary to refuse to comply with any of your individual rights, you will be informed of the decision within one month and you also have the right to complain about our decision to the Information Commissioner. It should also be noted that we can only implement your rights during the period upon which we hold personal identifiable information about you. Once the information has been irreversibly anonymised and becomes part of the research data set it will not be possible to access your personal information.
WHO CAN I CONTACT?
If you have any questions about how your personal information is used, or wish to exercise any of your rights, please consult the University’s data protection webpages. You can contact UCL by telephoning +44 (0)20 7679 2000 or by writing to: University College London, Gower Street, London WC1E 6BT.
Please note that UCL has appointed a Data Protection Officer. If you have any questions about this Privacy Notice, including any requests to exercise your legal rights, please contact our Data Protection Officer who can be contacted on firstname.lastname@example.org
HOW CAN I COMPLAIN?
If you wish to complain about our use of personal data, please send an email with the details of your complaint to, please send an email with the details of your complaint to the Data Protection Office (email@example.com) so that we can look into the issue and respond to you. You also have the right to lodge a complaint with the Information Commissioner's Office (ICO) (the UK data protection regulator). For further information on your rights and how to complain to the ICO, please refer to the ICO website (https://ico.org.uk/).