Protecting data

Everybody associated with the study has completed training around data and information protection before working on the study and working with study data. In addition, all members of the team have completed Good clinical practice training developed by National Institute for Health Research (NIHR). These training courses are repeated every 2-3 years to maintain high standards in data protection and handling.  All staff also sign annual confidentiality agreements.

Our data and information security is reviewed for use by NHS Digital (formerly Health and Social Care Information Centre; HSCIC) who ensures our security standards are acceptable for handling digital information. The University of Manchester has its own Cyber Security and Data Protection Policies which detail how digital information is handled, including confidentiality, integrity and availability and the use of encryption tools for the protection of sensitive information and communications.

See: Cyber security

The physical data questionnaires that participants provide to the study are kept locked and safe at the BSRBR-RA offices. The offices have a 24-hour security service and are protected by an alarm system. There is no public access to these offices and a 'clear desk and clear screen' policy is in operation.

The team at BSRBR-RA maintain high standards in data governance to ensure compliance with the General Data Protection Regulation (GDPR).  Further information regarding this can be found in the BSRBR-RA Patient Transparency Information Sheet.  We work closely with the Research Governance Office at the University. The study is open to internal audits by The University of Manchester Research Governance Office and external audits can be carried out at any time by study stakeholders including NHS Digital, the Medicines and Healthcare products Regulatory Agency (MHRA) or the National Institute for Health Research (NIHR).

We frequently publish aggregated data as results from the study. These are shared and presented globally in publications and at conferences. The researchers who work on with the data will never have access to participants’ personal data or information because they use anonymised datasets.

We will not send you any further questionnaires or surveys to you about your health, but we will continue to receive information from your rheumatology team at the hospital and via the linkage with the national databases.

We will not send you, or the rheumatology team at the hospital, any further forms or surveys asking about your health. Your record will still be linked with the national databases.

We will not send out any surveys or forms to yourself or rheumatology team at the hospital. We will also contact the national databases to un-link your record so no further information is received on your health status from the time you withdraw.