About the Data

Find below a list of the data sources we analyse in our projects. Additional information about each can be found here. Scottish Morbidity Records and QPI are updated on a yearly basis so data will be available up to 12 months prior extraction, while chemotherapy data is updated on a daily basis. 

Secondary Care

Type Source Description
Demographics Scottish Morbidity Records
SMRs/South-East Scottish Cancer Database
Information about the characteristics of people using NHS Lothian hospitals or facilities.
Scottish Cancer Registry  SMR06/South-East Scottish Cancer Database Record of cancer episodes at any NHS Lothian hospital or facility. Each record covers patient data, diagnosis, pathology, staging, and treatment information. Also includes dates, primary and secondary cancer, and any information from a corresponding death record.
Mental Health Services SMR04 Patient records relating to all inpatients and day cases admitted to, and discharged from, mental health facilities in NHS Lothian.
Outpatient Attendances  SMR00 Information about outpatient attendances at any NHS Lothian hospital or facility, including dates, times, conditions and procedures.
Admissions and Discharges SMR01 and TrakCare Healthcare utilisation – Information about admissions and discharges from any NHS Lothian hospital or facility, including dates, times, specialties involved, and reason for admission.
Quality performance indicators Quality Performance Indicators (QPIs) /Cancer Audit The Scottish Cancer Taskforce established the National Cancer Quality Steering Group (NCQSG) in 2008 which includes responsibility for the development of small sets (approximately 10-15 indicators) of tumour specific national quality performance indicators (QPIs). 
Chemotherapy ChemoCare

Chemotherapy prescribing system has been in use since 2006. Includes adverse events prior to each treatment, as well as ECOG.

Adverse events are recorded and graded following CTCAE guidelines for patients undergoing SACT. These include: Hypersensitivity, Constipation, Oesophagitis, Vomiting, Oral Mucositis, Hand/Foot, Nausea, Fatigue, Skin, Diarrhoea, and Neurotoxicity.

Emergency Department Attendances TrakCare Arrival and discharge details from all Emergency Attendances in NHS Lothian, covering Accident and Emergency departments, Minor Injury units, and Obstetrics Triage. Includes dates, times, incident circumstances, triage details, and referral and discharge information. 

Manually curated datasets

Ovarian cancerLinkThe Ovarian Cancer Database includes all confirmed cases and data is collected for demographics, treatments, CA125, and outcomes.
South East Scotland DatabaseLinkThe South East Scotland Oncology Database has been populated and maintained by the Department of Oncology at ECC since it was established in 1974.  The database contains a broad spectrum of data items across various stages of the cancer patient journey including diagnosis, treatment, follow-up and recurrence. 

 Diagnostic tests and investigations

Type Source Description
Laboratory results TrakCare Covering both primary and secondary care, this includes laboratory test results undertaken in NHS Lothian’s haematology, biochemistry, and microbiology labs.
Mutation status Clinical Genetics Held in isolation within NHS Lothian, the Clinical Genetics Service holds information on germline genetic testing for local patients.

Clinical trials

Clinical trial participationEdgeUK
national clinical trials patient database. This contains patient detains with
regards to screening, approaches, participation, randomisation and withdrawal
for all clinical trials operated within the Scottish Cancer Research

Linked national datasets

Cause of deathNational Records of ScotlandNationally curated data showing the date, place, primary cause and up to 10 secondary causes of death.
PrescriptionsPublic Health Scotland and Prescribing Information SystemSummary of prescriptions that are dispensed in the community (i.e. not within hospitals) throughout the NHS Lothian region.
Social deprivation scoreScottish Index of Multiple Deprivation
Summary data capturing the relative deprivation status of geographic areas of Scotland. Any dataset containing a postcode can be linked to summary deprivation data thereby supporting research into the relationships between living in specific areas and health.


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