Policy
How participants information is used in clinical research
Updated on 19 December 2022
As a University/ NHS organisation we use personally-identifiable information to conduct research to improve health, care and services.
As a publicly-funded organisation, we have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research. This means that when you agree to take part in a research study, we will use your data in the ways needed to conduct and analyse the research study. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.
Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.
If you wish to raise a complaint on how we have handled your personally-identifiable information, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personally-identifiable information in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).
Our Data Protection contact dataprotection@dundee.ac.uk or Tay.informationgovernance@nhs.scot
Information from medical records used to conduct health research
As a University/ NHS organisation conducting research there are studies where your personally-identifiable information may be obtained indirectly e.g. information is obtained from previously collected medical records or a database. Certain health research on information from medical records may not require you to agree to take part in the study.
For those studies where a code system is used and the key is kept confidential and not disclosed to the University of Dundee/NHS Tayside, University of Dundee/NHS Tayside will collect information about you for research from various sources such as the Information Services Division of NHS Scotland. These sources will not provide any identifying information about you to University of Dundee/NHS Tayside. We will use this information to conduct health research.
For other studies where the University of Dundee/NHS Tayside do receive personally-identifiable data, University of Dundee/NHS Tayside will collect information about you for research from various sources such as the Information Services Division of NHS Scotland. This information will include your name/ NHS number/ contact details / or other identifiers and health information, which is regarded as a special category of information. We will use this information to conduct health research.
For these studies your information can only be used by researchers if appropriate safeguards are in place to protect your information and only with the approval of the guardian of your personally-identifiable information together with approval by an independent ethics committee and permission from the NHS.
Information used for future research
When you agree to take part in a research study, the information about your health and care may be provided to researchers running other research studies in this organisation and in other organisations. These organisations may be universities, NHS organisations or companies involved in health and care research in this country or abroad. Your information will only be used by organisations and researchers to conduct research in accordance with the UK Policy Framework for Health and Social Care Research.
Where future research studies use your anonymous information it means this information will not identify you and will not be combined with other information in a way that could identify you. The information will only be used for the purpose of health and care research, and cannot be used to contact you or to affect your care. It will not be used to make decisions about future services available to you, such as insurance.
Where future research studies use your identifiable information it means your information could be used for research in any aspect of health or care, and could be combined with information about you from other sources held by researchers, the NHS or government.
Where this information could identify you, the information will be held securely with strict arrangements about who can access the information. The information will only be used for the purpose of health and care research, or to contact you about future opportunities to participate in research. It will not be used to make decisions about future services available to you, such as insurance.
Where there is a risk that you can be identified your data will only be used in research that has been independently reviewed by an ethics committee.
The data controller for your personal information is the University of Dundee and/or NHS Tayside. Your data may be processed by a nominated agent such as research collaborators, software or service providers.
Find out more about how we use your information:
Research Governance, Tayside Medical Science Centre (TASC)
tascgovernance@dundee.ac.uk