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?
- THIS Labs is collecting information about you on behalf of THIS Institute (University of Cambridge).
- Under data protection legislation, THIS Institute (University of Cambridge) is the Data 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 data processors for the information you provide in your answers to questions in the survey, acting on behalf of THIS Institute (University of Cambridge).
- Thiscovery is the Data Processor for the survey/s in this project.
- Thiscovery also hold the role of separate 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 may collect some information that could identify you, called “personal identifiable information” as follows:
- Optional information about your role and involvement with national programmes.
- Your name and email address if you would like to be involved in future phases of the study (second survey and/or simulation exercise) or receive a summary of the results.
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. For this project, the collection of the personal identifiable information is done on the basis of “the public interest” 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 for Thiscovery, Thiscovery will only contact you for the reasons you have consented to, for example to take part in related future activities. In these circumstances, your name and email address are not linked to the information you have provided by answering questions in the project.
- The only circumstances in which THIS Institute (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.
- If you opt to provide your name and email address for THIS Institute, this will be shared with THIS Institute. THIS Institute will store your name and email address on the ‘HubSpot’ platform, a secure customer relationship management (CRM) database. THIS Institute will only contact you with your permission to provide a summary of results, invite you to the next part of this project or to contact you about relevant future opportunities. Participants' contact details are kept for as long as legitimate interest exists (e.g. the project is ongoing or still relevant to the individuals) or until the individual unsubscribes.
- Thiscovery 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 job 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.
- Thiscovery takes 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 Thiscovery uses appropriate security measures once your personal information is received, the transmission of information when you submit it over the internet is never completely secure. Thiscovery does its 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?
- Thiscovery 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, Thiscovery may use some of the information gathered from you to improve the methods Thiscovery uses. If, to do so, Thiscovery needs to share information with external researchers or analysts, all information will be fully anonymised.
- By anonymised, that means Thiscovery 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 used in free-text responses)
- locate and remove any other indirect identifying information (such as specific details about experiences used in free text responses)
- Occasionally, information gathered for one project may be useful for researchers working elsewhere on another related project. If you agree to take part in this project, THIS Institute (University of Cambridge) or Thiscovery may share the information we gather from you anonymously with these like-minded researchers. Before any information is shared, the external researchers will be required to set up a strict data-sharing agreement with either Thiscovery or the THIS Institute (University of Cambridge) and will be bound by the same ethical and data protection requirements.
How long will my personal information and identifiable responses be held?
- THIS Labs and THIS Institute (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, all organisations 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 technical problems or questions about the platform, please contact the Thiscovery team at help@thiscovery.org.
- If you have a complaint about any aspect of the project, please contact the head of Public Health and Primary Care at the University of Cambridge, John Danesh, at john.danesh@medschl.cam.ac.uk.
- If you wish to raise a complaint about how we have handled your information, please contact the university Data Protection Officer at dpo@admin.cam.ac.uk.
- If you are not happy with their response or believe they are processing your data in a way that is not right or lawful, you can complain to the Information Commissioner's Office (ICO) at www.ico.org.uk or telephone 0303 123 1113.
How can I find out more about how my personal data is used?
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