Research & Information Services

Patient Identifiable Data

The WMCIU can provide patient identifiable data in accordance with the UKACR policy on the Release of Identifiable Patient Information for the purposes of research studies, clinical audits, clinical trials and genetics counselling.

An example of one such research project is the provision of dates and causes of death to a national colorectal screening trial. In order to access these data, the researchers secured Patient Information Advisory Group (PIAG) approval for the study to process patient identifiable information in line with Section 60 of the Health & Social Care Act 2001.

Even for identifiable requests we try to anonymise data wherever possible, for example by providing PCT of residence instead of address details or age group at diagnosis in place of date of birth. Details of the data recorded on the WMCIU’s cancer registration database are discussed here.

Genetics Counselling

Genetics counselling assesses whether an individual has an increased risk of developing cancer because of their family history. The WMCIU assists the West Midlands Family Cancer Strategy (WMFACS) and other genetics counselling centres throughout the country by locating relatives on our database and confirming details of their cancers. The individual can then be informed if they have an increased risk of developing cancer and about any special tests or monitoring which may be advisable.

If you are concerned about your familial risk of cancer please see your GP or Practice Nurse who will be able to refer you to your local surveillance or clinical genetics service if he or she feels that this is appropriate.