For HOME Study participants
This notice is being provided to comply with GDPR 2018.
Who is responsible for your data?
The University of Oxford is the sponsor for this study based in the United Kingdom. We will be using information from you and your medical records in order to undertake this study and will act as the data controller for the study. This means that we are responsible for looking after your information and using it properly.
Personal data we collect about you
Researchers at your local hospital will collect information from you and your medical records for this research study, in accordance with our instructions. They will use your name and NHS number 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 Oxford and regulatory organisations may look at your medical and research records to check the accuracy of the research data.
Your local hospital researchers will pass your name, date of birth, NHS number and contact details including your address, telephone number and email address (if applicable) to the University of Oxford along with the information collected from you and your medical records. 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 ask your follow-up questions or people who audit the data collection process.
How we use your personal data
The University of Oxford uses 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. 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.
How long we keep your personal data
The University of Oxford and your local hospital will keep identifiable information about you for up to five years after the study has finished.
How we protect your data
We protect your personal data against unauthorised access, unlawful use, accidental loss, corruption or destruction. We use technical measures such as encryption and password protection to protect your data and the systems they are held in. We also use operational measures to protect the data, for example by limiting the number of people who have access to the databases in which your data are held. We keep these security measures under review and refer to University Security Policies to keep up to date with current best practice.
Sharing your data
The University of Oxford will collect information about your health and healthcare use for this research study from NHS Digital. NHS Digital exists to improve health and care by providing national information, data and IT services for patients, clinicians, commissioners and researchers. It also obtains mortality data on NHS patients from the civil registration data held by the Office for National Statistics. NHS Digital will be sent your name, sex, date of birth and NHS number so that they can send the University of Oxford information about your health and healthcare use. NHS Digital will send the following information to the University of Oxford: dates and reasons for any NHS hospital admissions, outpatient appointments and Accident and Emergency attendances in the year before you started to take part in The HOME Study and the year after; if you die, the date and the causes of your death. Health information is regarded as a special category of information. We will use this information to compare the two different ways of looking after older people that we are studying in The HOME Study.
The University of Oxford will send information collected about you for this study to the London School of Hygiene and the University of York, where the study analyses will be done. The information sent will contain your date of birth and sex. It will not contain your name, NHS number or contact details. 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.
At the end of the study, The University of Oxford may share anonymised data from study participants with other research groups who are doing similar research. If we do this, we will not share any data collected from your medical records or from NHS Digital. We will not share any information that will identify you, could be combined with other information in a way that could identify you, or could be used to contact you. We will only share information for the purpose of health and care research.
The data sharing described above will not affect your care or be used to make decisions about future services available to you, such as insurance.
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.
If you would like to contact us directly for more information about how we process and protect data collected for this study, please email email@example.com.