Data Protection

If you are participating in the OPAL study the following information may be of interest to you.

The Oxford Pain, Activity and Lifestyle study is co-ordinated by the University of Oxford and is led by Professor Sallie Lamb. The study is paid for by the National Institute for Health Research. The OPAL study is about health outcomes in older adults. The information that we collect will help us to understand how a person’s health, including conditions such as back pain, affect their mobility as they age, and provide insight into improving the management of health in older adults. 

The University of Oxford is the sponsor for this study based in the United Kingdom. We will be using information from you in order to undertake this study and 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 Oxford will keep identifiable information about you for five years after the study has finished.

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.

You can find out more about how we use your information at www.octru.ox.ac.uk and/or by contacting octrutrialshub@ndorms.ox.ac.uk.

The OPAL study team will collect information from you for this research study in accordance with our instructions.

Initially your GP practice, and then (after you agreed to join the study) the OPAL study team, will use your name, date of birth, NHS number and contact details to contact you about the research study. These details will also be used to 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 Oxford and regulatory organisations may look at your research records to check the accuracy of the research study. The OPAL study team will collect these details for the University of Oxford along with the information collected from you. The only people in the University of Oxford who will have access to information that identifies you will be people who need to contact you to; send your follow-up questionnaires, send information on the study results, and to audit the data collection process. The people who analyse the information will not be able to identify you and will not be able to find out your name, NHS number or contact details.

The OPAL study team will keep identifiable information about you from this study for five years after the study has finished.

The University of Oxford will collect information about you for this research study from your GP practice.  This information will include your name, NHS number, contact details and date of birth, and confirmation that the GP feels that it is appropriate to continue to contact you regarding this study. With your consent, the University of Oxford may also collect information about you from NHS Digital relating to the level of health service usage during the time you are participating in the study.

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.

We would like to thank you again for taking part in the OPAL study. The information that you have provided is invaluable in helping us to understand how a person’s health affects their mobility as they age, and will provide insight into improving the management of health in older adults.

If you have any questions about the study please contact the study team (details at the bottom of this page).