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. Updated yearly. |
| 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. Updated yearly. |
| Mental Health Services | SMR04 | Patient records relating to all inpatients and day cases admitted to, and discharged from, mental health facilities in NHS Lothian. Updated yearly. |
| Outpatient Attendances | SMR00 | Information about outpatient attendances at any NHS Lothian hospital or facility, including dates, times, conditions and procedures. Updated yearly. |
| 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. Updated yearly. |
| 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). Cancer specific reports can be found on the PHS website here. Updated yearly. |
| 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. Updated daily. |
| 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
| Type | Link | Description |
| Ovarian cancer | Link | The Ovarian Cancer Database includes all confirmed cases and data is collected for demographics, treatments, CA125, and outcomes. |
| South East Scotland Database | Link | The 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. |
| Brain Cancer Database | Link | Compiled by Dr Paul Brennan, this is an exceptionally detailed dataset of more than 1,400 patients diagnosed with brain tumours in Scotland. |
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. Updated daily. |
| Mutation status | Clinical Genetics | Held in isolation within NHS Lothian, the Clinical Genetics Service holds information on germline genetic testing for local patients. Updated yearly. |
Clinical trials
| Type | Source | Description |
| Clinical trial participation | Edge | UK 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 Networks. |
Linked national/regional datasets
| Type | Source | Description |
| Death data | National Records of Scotland | Nationally curated data showing the date, place, primary cause and up to 10 secondary causes of death. Updated 6-monthly. |
| Prescriptions | Public Health Scotland and Prescribing Information System | Summary of prescriptions that are dispensed in the community (i.e. not within hospitals) throughout the NHS Lothian region. Updated monthly. |
| Social deprivation score | Scottish Index of Multiple Deprivation (SIMD) | 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. Updated yearly. |
| Costings | Patient Level Information and Costing System (PLICS) | NHS Lothian is the first Health Board in Scotland to implement its own PLICs system. PLICS uses a hybrid costing method, adhering to standardised methods to assign costs to the individual components of care episodes. Example components are nursing time, medicines cost and surgical theatre time. |