The 'Improving the experience of Dementia and Enhancing Active Life' (IDEAL) study is led and co-ordinated by the University of Exeter. 
Investigators: L. Clare, I.R. Jones, C. Victor, J.V. Hindle, R.W. Jones, M. Knapp, M. Kopelman, R. Litherland, A. Martyr, F.E. Matthews, R.G. Morris, S.M. Nelis, J. Pickett, C. Quinn, J. Rusted, J. Thom (2014-2018)

This statement explains how the IDEAL research team at the University of Exeter use the personal data we hold about people who take part in the study.

The University of Exeter (the "University") is a data controller and is committed to protecting your personal data and working in accordance with all relevant data protection legislation. The IDEAL research team adhere to the University of Exeter guidance on the use of research participant data and this can be found here.

Data protection principles under the General Data Protection Regulation (GDPR) for Exeter University can be found here.

The University’s Data Protection Officer is Rhiannon Platt, Information Governance Manager, who can be contacted by emailing dataprotection@exeter.ac.uk

  • The IDEAL study is funded by the Economic and Social Research Council (UK) and the National Institute for Health Research (UK) through grant ES/L001853/2 ‘Improving the experience of Dementia and Enhancing Active Life: living well with dementia’.
  • This study aims to find out what social and psychological factors support or hinder the ability of people and their families to live well with any type of dementia or similar problems.
  • It is a longitudinal study involving people living with dementia (1547 at the first set of visits), and where available their primary carers (1283 at the first set of visits), recruited in 29 National Health Service memory services and specialist clinics in Great Britain, and via the Join Dementia Research portal.
  • As part of the study we also aim to link information collected from IDEAL interviews to other routinely-collected health service data for those respondents with dementia, this is known as ‘data linkage’.

The University holds responses from IDEAL interviews for all people with dementia and carers that have completed an IDEAL consent form and then taken part in interviews. These responses are identified by a unique participant ID number which allows the data to be anonymous.

One option on the IDEAL consent form was to also share personal data with the research team at the University of Exeter. If you have consented to share personal information about you with the study team, then the IDEAL research team at the University of Exeter may hold some or all of the following information:

  • Personal Identifiers and Biographical Information – this may include your name and date of birth.
  • Contact Details – for example your address, email address and telephone number (we update these whenever you tell us they have changed).
  • Other Details – for example address, email address and telephone number of your GP and trusted family member/friend instead.
  • For those that also completed a separate ‘IDEAL data linkage’ consent form, the University may also have been given your NHS number (England & Wales) or CHI number (Scotland).
  • Some of the personal data the IDEAL project processes about you will be 'sensitive personal data'. This category of personal data will be subject to additional protections.
  • Sensitive personal data is defined as information such as your racial or ethnic origin, political opinions, religious or similar beliefs, physical or mental health or conditions.
  • This information may be processed for one of the reasons set out above for the purposes of research undertaken in the public interest.

Your personal data is collected to enable the IDEAL research team at Exeter University to carry out
research in the public interest.

The University collects your personal data from the following sources, only as required for the
purposes of each research project and with any necessary regulatory approvals in place:

  • From individual research participants
  • From those caring for or associated with individual research participants

Here are some of the ways we will use your personal data, this is not exhaustive, but is intended to provide you with an idea of the things that we may do throughout your relationship with the University.

  • For research data analysis
  • To maintain participant safety, dignity and wellbeing
  • In publications or resources for research, education or public engagement purposes
  • To maintain data for use in future research projects or research archives

1. Communication with You

The IDEAL research team at the University of Exeter may use your data to provide updates on the study and invitations to take part in other research or activities.

This might include:

  • Sending our newsletters and project updates
  • Inviting you to events
  • Telling you about new studies

 

Communications may be sent to you by post, telephone, or email if provided.

2. Data linkage

Personal data of people with dementia will only be used for ‘data linkage’ for those who have completed an ‘IDEAL data linkage’ consent form.

We will be arranging to link the IDEAL study dataset with health service use administrative datasets in England, Scotland and Wales with the assistance of the ESRC-funded Administrative Data Research Network (ADRN). The ADRN offers a liaison service between data controllers and researchers to identify administrative datasets.

  • To obtain information from data controllers such as NHS Digital, the University of Exeter will need to provide them with your NHS number, date of birth, postcode and your unique participant ID number.
  • This information will be provided to NHS Digital in a spreadsheet format.
  • NHS Digital will then link these identifiers to the Medical Research Information Service (MRIS) and national death records and send back a spreadsheet confirming the latest status for each patient, and if relevant, date of death. Mortality data is provided on behalf of the Office for National Statistics and is sourced from civil registration data. The cancer registration data is provided by NHS Digital on behalf of Public Health England.
  • Updated data will then be added to the secure IDEAL participant database to ensure no contact is attempted with people who have passed away.
  • Information held by NHS Digital via the Personal Demographics Service (PDS) held on the Medical Research Information Service (MRIS) Integrated Database and Administrative System (MIDAS) and other UK NHS bodies such as Public Health England (PHE) and the Office for National Statistics (ONS) may be given to the researchers and be used to provide information about your hospital episodes; contact with health professionals, such as General Practitioners and community nurses; information on any health problems; and the date and cause of death.
  • Researchers from the IDEAL study are only allowed to access the linked data in strictly controlled conditions.
  • For each country involved in the study, researchers can access administrative data in a secure facility hosted by the data custodian or one of the ADRN Data Research Centres (e.g. University of Southampton). Each facility strictly protects the privacy of any personal and/or sensitive data used for research.
  • These facilities allow researchers to use statistical software to analyse the data. They cannot take anything in or out of the room (including mobile phones, memory sticks or even pen and paper), and they will not be able to copy, download or disseminate the data in any way.
  • The information sheet and consent form for data linkage can be found on the IDEAL website here.

 

  • Your data is held securely as part of the study, and is stored on an IDEAL password protected participant database.
  • The database is only accessible to a limited number of research staff at the University.
  • All staff who access the database have completed the University’s data protection training.
  • In general, data are kept for as long as it continues to be required or until we stop the IDEAL study.
  • When presenting information in research articles your personal information is never revealed. These published articles can be found here.
  • The University will endeavour to be transparent about its processing of your personal data. However, should you have any queries about the University’s processing of your personal data, further information may be obtained from the Information Governance Manager by emailing dataprotection@exeter.ac.uk or on our data protection webpages.
  • You have the right to complain to the Information Commissioner if you have any concerns in respect of the handling of your personal data by the University.
  • You have a number of rights in relation to your personal data. Information about what these rights are and how to exercise them is available on our data protection webpages. Read more here.
  • If you no longer want to receive IDEAL communications by post, telephone, text, or email then please contact the person below to stop receiving these updates.
  • If you think that any of your personal data held by the IDEAL project is incorrect (for example if you move address), please inform the contact person listed below so that we can update our records accordingly.
  • If you wish to withdraw your consent for involvement in the IDEAL study, or your consent to data linkage (whereby we link your data obtained in the IDEAL study with administrative data) then please inform the contact person below:

Contact Person:
Dr Ruth Lamont
Research Fellow
South Cloisters
University of Exeter
St Luke's Campus, Heavitree Road, Exeter, EX1 2LU, UK
Phone: +44 (0) 1392 726865
Email: R.Lamont@exeter.ac.uk

More information about IDEAL can be found on the IDEAL website.