Data protection - information for participants

General Data Protection Regulations 

As a university 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 usual statutory rights to access, change or move your information are limited, because of exceptions applicable to some types of research, and also because 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.

As a University we use personal information to conduct research that will [either] be in the public interest, [or the legitimate interests of the College].

As a publicly-funded organisation we have to ensure that when we use personally-identifiable information from people who have agreed to take part in research, it is [either] in the public interest, [or that our legitimate purposes are both properly notified to you and are not overridden by your rights].

We will conduct scientific research in compliance with the law and the recommendations and guidance published by the UK Information Commissioners Office (ICO). This will follow similar rules to health and care research but may not meet the defination of the College's public interest task. In such cases we will be holding and using your data for what are deemed our "legitimate interests".

When you agree to take part in a research study, the information you provide may be shared with researchers running other research studies in this organisation and in other organisations. These organisations may be Universities or Companies involved in similar research in this country or abroad. However, we will take such steps as are ethical, appropriate, and in line with the law and ICO Guidance, to minimise the personal aspect of the data in both processing and sharing it insofar as the research allows it.

If you wish to raise a complaint on how we have handled your personal data, 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 personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO). The ICO does recommend that you seek to resolve matters with the data controller (us) first before involving the regulator.

Send an email to the Data Protection Officer or reach them via telephone on 020 7594 3502 and via post at Imperial College London, Data Protection Officer, Faculty Building Level 4, London SW7 2AZ.

Data collection

Imperial College London will collect information about you for research from the NHS or other sources. For certain studies the source of the information will provide identifying information such as your name, NHS number, contact details and health information, which is regarded as a special category of information.

We will only use this information to conduct our research.

Commercialisation

Where you provide specific consent, samples / data from studies may also be provided to organisations e.g. commercial organisations or non-commercial organisations for the purposes of undertaking further studies, future research studies or commercial purposes such as development by a company of a new test, product, service or treatment. We will ensure your name and any identifying details will NOT be given to these third parties, instead you will be identified by a unique study number with any sample analysis having the potential to generate ‘personal data’. 

Aggregated (combined) or anonymised data sets (all identifying information is removed) may also be created using your data (in a way which does not identify you individually) and be used for such research or commercial purposes where the purposes align to relevant legislation (including the GDPR) and wider aims of the study.  Your data will not be shared with a commercial organisation for marketing purposes.

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.

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.