NHS Digital Data Release Register - reformatted
Western General Hospital projects
19 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).
Project 1 — DARS-NIC-147833-FGBLJ
Opt outs honoured: N ()
Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC, Health and Social Care Act 2012 – s261(2)(c)
Sensitive: Sensitive, and Non Sensitive
When:2017.09 — 2017.02.
Access method: Ongoing
- MRIS - Cause of Death Report
- MRIS - Cohort Event Notification Report
This study started in 2000. Ethics approval was obtained at that time and the patient consent forms fullfilled the criteria for consent. The consent forms were updated in 2005 to comply with current regulations and to include specific permission to "obtain information held by the NHS and records maintained by the General Register /Office".
Before closure all names and geographical identifiers of patients are made
anonymous - only the trial identifier links the patient to the paper questionnaires.
When the database is closed it is archived in a secure directory where only the statistician has access, burned on CDs - this is the data that is presented in the analysis. The CDs are labelled and stored in the fireproof safe.Access to this data is controlled by defining the roles of various users and their access levels.Data entry is done using a Visual FoxPro front-end with password access limited to only members of the trial support group.
The primary outcome in this study is death and dependency. Patients are followed up at six months, eighteen months and annually thereafter until the end of the study.
Electronic data is stored using a secure, password protected SQL Server. Access to this data is controlled by defining the roles of various users and their access levels. This is backed up nightly and tapes are stored in a fireproof safe on-site. Off-site backup is done nightly by central
university. Data entry is done using a Visual FoxPro front-end with password access
limited to only members of the trial support group. Any data entered using a web browser is password protected, is collected using an encrypted web server and is stored in SQL Server.