Information for Participants
If you have any questions on the information given in this section, please contact the study coordinator.
At the University of Bristol, we are committed to keeping personal data and research data safe and confidential.
As a university, we use personally-identifiable information to conduct research to improve health, care and services. When you agree to take part in a research study, we only use your data in the ways needed to conduct and analyse the research study.
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 we have to demonstrate that our research, and the use of the personally-identifiable information, serves the interests of society as a whole.
We do this by following the UK Policy Framework for Health and Social Care Research (https://www.hra.nhs.uk/planning-and-improving-research/policies-standards-legislation/uk-policy-framework-health-social-care-research/).
How we use your data
The questionnaire and medical records data for the SASH study and the Follow-up SASH Hip & Knee Study have been entered in to our study databases. Each record is identified by a unique participant number.
Access to all of our databases is limited to a small number of study staff.
All databases are password protected and held in a restricted access folder on a University of Bristol server.
Paper records are held securely in an archive storage area.
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 such as universities or the NHS. Your information will only be used by other 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. It 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.
Your data will be retained for a minimum of ten years after the completion of the Hips study, in line with research guidelines.
Under General Data Protection Regulations (GDPR) you have a number of important rights, free of charge. Further information about these rights can be found on the Information Commissioners website: www.ico.org.uk/for-the-public/
To safeguard your rights, we will use the minimum personally-identifiable information possible.
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 SASH study, we will keep the information about you that we have already obtained. If you withdraw from the Hips study, we will delete your data from this study. If you wish to withdraw, please contact the study coordinator.
If you wish to raise a complaint on how we have handled your personal data, you can contact the study coordinator (details below) or our Data Protection Officer (email@example.com).
If you are not satisfied with our response or you believe we are processing your personal data in a way that is not lawful, you can complain to the Information Commissioner’s Office (www.ico.org.uk/concerns/).