The BRIGHTLIGHT Team would like to announce our transparency statement related to all the studies we are currently conducting. This includes the following studies:
BRIGHTLIGHT Cohort Study (IRAS reference 81684)
BRIGHTLIGHT Case Study (IRAS reference 141496)
SAM study (IRAS reference 230903)
End of Treatment Study (IRAS reference 236864)
As a 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. We believe that our research is in the interests of society as the central aim of all our research is to improve the delivery of care and thus outcomes for patients with cancer.
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).
Our Data Protection Officer is Deborah Dillon and you can contact them at Deborah.firstname.lastname@example.org.
The BRIGHTLIGHT Team at University College London Hospitals NHS Foundation Trust will or has collected information from you and/or your medical records, from Public Health England and NHS Digital for the research studies listed above in accordance with our instructions. This includes information about your cancer, the treatment you have received and where you have been treated.
The BRIGHTLIGHT Team will keep your name and contact details confidential and will not pass this information to anyone else based at University College London Hospitals NHS Foundation Trust. The BRIGHTLIGHT Team will use this information as needed, to contact you about the research study, and make sure that relevant information about the study is recorded for your care, and to oversee the quality of the study. Certain individuals from University College London Hospitals NHS Foundation Trust and regulatory organisations may look at your medical and research records to check the accuracy of the research study. University College London Hospitals NHS Foundation Trust will only receive information without any identifying information. The people who analyse the information will not be able to identify you and will not be able to find out your name or contact details.
The BRIGHTLIGHT Team will keep identifiable information about you from this study for 2 years after the study has finished.
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.
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.
If you have taken part in any of our completed research projects, you can be assured that we have removed all your contact details from our records. If you would like to be kept informed on the progress of research you have participated in, please look at our website and follow us on Twitter @bR1GhTLiGhT