The University of Bristol is the sponsor for this study and is based in the United Kingdom. We will be using information from your medical records as well some information about you including your name, address and contact details in order to undertake this study.
The University of Bristol will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. The University of Bristol will keep identifiable information about you for 5 years after the study has finished.
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 only when you agree to take part in a research study, will we 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 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.
You can find out more about how we use your information by contacting triumph-study@bristol.ac.uk or data-protection@bristol.ac.uk.
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 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 Henry Stuart and you can contact them at data-protection@bristol.ac.uk.
Your GP surgery will use your name, NHS number and your contact details 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. Individuals from The University of Bristol and regulatory organisations may look at your medical and research records to check the accuracy of the research study.
When you express an interest to the University of Bristol in taking part in TRIUMPH, we will share your contact details with the National Institute for Health Research Clinical Research Network (NIHR CRN) for your local area (either West of England or Wessex). These details are held at the University of Bristol and are not transferred outside of the organisation. The CRN have been approved by the University of Bristol to access this information. The only purpose of the CRN having access to your contact details is to conduct a phone call to check you are able to participate in TRIUMPH. After all the recruitment has been completed, the CRN will no longer be involved and will not have access to this information any longer.
If you agree to take part and are informed you are in the intervention group (receives a booklet at an appointment with a nurse), your details may be shared with the TRIUMPH Study Nurses local to your area. The nurses are based at North Bristol NHS Trust and University of Southampton. The purpose of the sharing of your contact details with the TRIUMPH Study Nurses is to allow the nurses to make an appointment with you to see them at you GP practice. They will also contact you (either by phone, text or email) an additional 3 times after the visit to see how you are getting on with the booklet. The nurses will also be sent a copy of the questionnaires you completed at the beginning which will allow them to have an open discussion with you at the visit about your responses on the completed questionnaires.
The only people in The University of Bristol, NIHR CRN, North Bristol NHS Trust and University of Southampton who will have access to information that identifies you will be people who need to contact you to complete the eligibility to take part, complete a face-to-face visit, follow up contact, audit the data collection process and people who will do the analysis.
The University of Bristol will collect information about you for the purpose of the TRIUMPH study from your medical records. This information will include your name, NHS number, Date of Birth, address and health information, which is regarded as a special category of information. We will use this information to contact you during the follow up stage of the study and for qualitative interviews.
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.