Data security
- Your right to privacy is important to Thiscovery and to the project team.
- Thiscovery takes the security of your information seriously and has policies and processes in place to ensure that your data is safe.
- Thiscovery’s privacy policy describes the way information is collected, used and protected.
- For specific information about how information will be used in this project, please see below.
Who is responsible for collecting my information?
- Thiscovery is collecting information about you on behalf of the IMPROVE CSDH project team, based at the University of Cambridge.
- Under data protection legislation, the University of Cambridge is the Controller for the project. This means that they are responsible for making sure your personal information is kept secure, confidential and used only in the way you have been told it will be used. They are supported in this by Thiscovery who are known as data processors for this project.
- Thiscovery are data controllers for your contact information (name and email address), should you choose to provide this at the end of the survey and give consent for Thiscovery to use this to contact you. Thiscovery are therefore also responsible for making sure this personal information is kept secure, confidential and used only in the way you have been told it has been used.
What information will you collect about me?
- To take part in this project the project team will need to collect information that could identify you, called “personal identifiable information”. They will need to use the following information from you for this project:
- Your answers to questions; some of the information that you provide whilst answering questions might be considered as health data or other data that would be classed as Special Category data under the UK General Data Protection Regulation (UK GDPR).
- Optional information about your professional role, clinical area of work and your involvement in the care of patients with chronic subdural haematoma.
- Your name and email address if you would like to be contacted by the project team to find out more about their work or the findings of the study, to be invited to take part in future activities, to be acknowledged by name on publications and/or to receive a certificate of participation.
What is your lawful basis for processing my personal information?
- Thiscovery is collecting and storing this personal identifiable information in accordance with UK data protection laws which protect your rights. These state there must be a lawful basis (specific reason) for collecting your data. The lawful basis for processing your personal information is decided by the University of Cambridge as Controllers for the data.
- For this project, the collection of the personal identifiable information is done on the basis of “a public interest task” and “a process necessary for research purposes”.
How will my personal information be looked after?
Your data will be looked after in the following way:
- If you opt to provide your name and email address, Thiscovery will keep this securely. We will only contact you with your permission to provide a summary of results, to invite you to future activities, to enable acknowledgement of your participation in publications, to provide a certificate of participation or to let you know about the project team’s work – depending on your stated preferences.
- The only circumstances in which the project team based at the University of Cambridge will have access to your name and email address (if provided) is if you have given permission for them to contact you directly. In these circumstances, your name and email address are not linked to the information you have provided by answering questions in the project.
- We separate your name and email address (if provided) from any answers you provide as part of this project and store these securely in separate datasets, one containing contact details and one containing your project responses.
- This means that in the project dataset, instead of using your name and email to identify your responses, an ID number will be used instead. This is called pseudonymisation.
- The pseudonymised dataset is what the project team will use for analysis. This dataset may contain other personal information as part of the answers you give to questions in the project, such as information about your role.
- Unfortunately, if you opt out of providing your name or email, you may not be able to withdraw from the project if you decide later you no longer wish to be involved, as it may not be possible to identify your response.
- We take appropriate technical and organisational measures to ensure that your information is kept secure, accurate and up to date, and only kept as long as is reasonable and necessary.
- Although we use appropriate security measures once your personal information is received, the transmission of information when you submit it over the internet is never completely secure. We do our best to protect personal information but cannot guarantee the security of information transmitted to its website, so any transmission is at the user’s own risk.
- Further information on how Thiscovery will process your personal information, and how to manage your Thiscovery account (if you have one), is available in Thiscovery’s privacy policy.
Will my personal information ever be shared?
- We will never share personal information in any way not described in this participation information or in Thiscovery’s privacy policy.
- However, occasionally information provided within a project may be useful to better understand how to conduct online research or to develop new approaches to analysing data.
- If you agree to take part in this project, we may use some of the information we gather from you to improve the methods we use on Thiscovery. If, to do so, we need to share information with external researchers or analysts, all information will be fully anonymised.
- By anonymised, we mean that we will:
- remove the ID number used to link your answers to your name and/or email (if provided)
- locate and remove any other identifying information (for example, names of NHS Trusts, place names)
- locate and remove any other indirect identifying information (such as specific details about health or experiences)
How long will my personal information and identifiable responses be held?
- Thiscovery and the project team at the University of Cambridge will not keep personal data longer than is necessary for the purpose or purposes for which they were collected. For this project, this means that once the project team have finished all analyses and produced all the outputs needed for the project, we will take all reasonable steps to destroy, or erase from systems, all data that is no longer required.
What if I have a complaint or concern?
- For questions or concerns about anything to do with the project, please contact the project team/the Project Lead Dr Daniel Stubbs at djs225@cam.ac.uk.
- For technical problems or questions about the platform, please contact the Thiscovery team at help@thiscovery.org.
How can I find out more about how my personal data is used?
