There are several government agencies/data repositories in the UK that hold patient information that we require for our research. We have to apply to each agency separately and comply with their criteria in order to obtain or hold this information. In addition to this, in many cases, we have to submit annual reviews/assessments to show that we are complying with all the requirements. Some of the data repositories/agencies we use are listed below.
Office of National Statistics (ONS)
The ONS collects information on cause of death from civil registration records related to a person’s death taken from the death certificates for all deaths registered in England and Wales. In the past, we obtained information on cancer diagnoses and deaths from the ONS. The CSPRG no longer obtains follow-up data on cancer diagnoses and deaths from the ONS directly, instead getting this data via NHS Digital.
We obtain ONS cancer and mortality data through NHS Digital. We comply with the Information Governance (IG) Toolkit required by the NHS Digital, which is a detailed assessment to ensure that we follow strict Information Governance policies and standards to ensure the confidentiality of the data held by us.
The National Cancer Registration and Analysis Service (NCRAS) registers all cancers and some pre-cancerous lesions diagnosed in England. The Welsh Cancer Intelligence and Surveillance Unit (WCISU) does the same for Wales. We obtain cancer staging information, which is based on the size and/or extent (reach) of the original (primary) tumour, the location of the cancer and whether or not the cancer has spread in the body. This provides very valuable insight for our bowel cancer research.
NHS Bowel Cancer Screening Programme (BCSP)
We sometimes request pseudonymised data (no patient identifiers are shared with us) that are collected as part of the Bowel Cancer Screening Programme. We do this because applying our research techniques to the very large numbers of people included in the screening programme helps ensure our results are of high quality. We have to obtain permission from the Office for Data Release (ODR) before doing this. The ODR ensures that all releases are conducted in accordance with the rights of the data subject, the legislative framework (including the principles set out in the GDPR and Data Protection Act 2018) and the seven Caldicott Principles.
NHS National Services Scotland (NSS)
Information Services Division (ISD) Scotland is part of NHS National Services Scotland and we obtain the cancers and mortality data that are registered in Scotland for patients who either currently live in Scotland or who previously lived in Scotland. We have to obtain approval from the Public Benefit and Privacy Panel for Health and Social Care(PBPP) before ISD can release any information to us.
NHS Central Register (NHSCR)
The National Health Service Central Register (NHSCR) exists mainly to allow the smooth transfer of patients who move between Health Board areas (or across borders within the UK). We obtain the cancer and mortality data that are registered in Scotland for patients who either currently live in Scotland or who previously lived in Scotland. It allows us to validate the data provided by the NSS or NHS Digital and obtain cancer or mortality data that may have been missed by other agencies. Before we obtain any data we have to obtain approval from the Public Benefit and Privacy Panel for Health and Social Care (PBPP).