NIHR Maudsley Biomedical Research Centre, South East London Community Health [SELCoH] Study, King’s College London

Data Handling, Data Redeposit and Storage Agreement

Data handling agreement
I agree to abide by the following rules regarding the use, handling and storage of personal data belonging to the participants of the SELCoH study who agree to be recontacted.

1. To observe complete confidentiality towards any information regarding study members.
2. Not to disclose to unauthorised persons any personal information belonging to study members.
3. To ensure all information relating to study members is held securely on a KCL OneDrive account, a KCL network drive (e.g. N or R drive), or an encrypted, password-protected memory stick. Information in paper form must also be held securely, in locked cabinets. The data must not be accessible by any unauthorised persons.
4. To regularly review security risks and respond appropriately to reduce the risk of a security breach.
5. To ensure against loss of personal data, held in electronic or paper form, of study members (but to report any losses of personal identifiable data, including such data which is encrypted, to SELCoH immediately should they occur).
6. To ensure that any electronic data is stored using encryption and password protection. Tape recordings of interviews should be encrypted if possible.
7. To comply with KCL’s password policy; passwords should be a minimum of 8 digits in length and contain uppercase and lowercase characters as well as numbers. Passwords must be held securely (e.g. not written down).
8. To take special care when transporting completed questionnaires/interviews and tape recordings following an interview.
9. To assign members of your study a unique ID number and to identify interviewees by this number on tapes and other research materials in order for such materials to be anonymous as far as possible. Questionnaires and interview schedules should not contain any personal identifiers (such as names, addresses, DoBs, Service number, etc).
10. To assign a second unique ID number to data held in statistical programmes to prevent unauthorised linkage with personally identifiable data. The key linking the two IDs should be stored separately.
11. To present and discuss study findings in a manner which would not reveal the identity of study participants.
12. To back up all data regularly, and ensure backups are encrypted and password protected.
13. To keep all named data within the UK. Only anonymous data should be taken outside of the UK.
14. To dispose of personal details appropriately and securely, whether held on paper, electronically or on tape. Paper documents should be disposed of using a shredder or the University confidential waste system. Dispose of personal details as soon as they are no longer required.
15. To store research materials that need to be retained at the end of the study via the University archive system.
16. I will NOT do any of the following without explicit permission from the Project Manager or Director: store or transfer personal data on unauthorised devices (e.g. mobile phones), send personal information by email or text message, remove personal information (held either in an electronic or paper format) from KCL study offices, access study databases remotely, or disclose passwords/codes/pins. I will NOT attempt to access information that I am not authorised to. I agree to ensure security of the premises at all times in order to prevent unauthorised access, and will ensure that all information is stored securely and is not accessible to external parties. Any confidential information that is not to be stored should be destroyed in an appropriate and secure manner.

I agree to abide by these rules, and understand that any breach of confidentiality is a serious offence. I will observe absolute confidentiality towards study members, and will make every effort to ensure the security of the details I hold, preventing data loss and unauthorised access.

I also agree to redeposit any new dataset and share relevant information with the SELCoH study.

Biological sample, image and qualitative data storage agreement
I agree to hold any biological sample data, images or transcripts from participants of SELCoH’s study confidentially and securely. I will provide a document with the location of storage, for how long we intend to store and the responsible person. I will notify the SELCoH data manager if these details change. I will also make the data accessible to the SELCoH team.

Data redeposit/archive agreement
At the end of the project, I agree to redeposit the data collected from participants of the SELCoH study, to SELCoH. This includes information extracted from Biological samples, images and qualitative interviews. I will provide a fully documented file containing variables and value labels with a signed data deposit form. In cases of linkage of SELCoH data to clinical or other datasets, I will provide summary variables together with the details of how the data was interrogated and the queries used to extract the data. The SELCoH data manager will
• Catalogue, document, and enhance the data.

• Store, translate, copy or re-format the data in any way to ensure its future preservation and accessibility.

• Take reasonable measures to prevent unauthorised access to duplication of or distribution of the data.

• Permit registered users to access and use the data or any part of it

• Request registered users publishing any work based in whole or in part on the data collection to acknowledge the original data creators, depositors and the funders of the data collections.