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The Administrative Data Research Network is an ESRC-funded project that ran from October 2013 - July 2018. It is currently at the end of its funding cycle and is no longer taking applications. Administrative data research will be taken forward in a new project, to be launched later in 2018.

SMR06 – Scottish Cancer Registry, 1958-

Title Details

SN:
888036
Title:
SMR06 – Scottish Cancer Registry, 1958-
Principal investigator(s):
Information Services Division - NHS National Services Scotland
Data collector(s):
Information Services Division - NHS National Services Scotland

Subject Categories

  • Health services and medical care - Health

Abstract

  • Abstract copyright ADRN.

    The Scottish Cancer Registry (SMR06) is responsible for the collection of information on Scottish residents when they are diagnosed with malignant (and some benign) tumours. The registry began in 1958 collecting personal, demographic and diagnosis information (such as site, histology, behaviour, histological confirmation and hospital of diagnosis) from cancer patients. In 1997, a new electronic cancer recording system was launched and at this point the registry was extended to include extra information on tumour stage (for breast, cervical and colorectal cancer), tumour grade and treatment information. A wide variety of geographical data is also included in the dataset including Scottish Index of Multiple Deprivation and Carstairs measures, census output area, NHS Board, Electoral Ward and Parliamentary constituency.

    The Scottish Cancer Registry has been collecting information on Scottish residents diagnosed with cancer since 1958, currently assessing around 80,000 provisional registrations per year, resulting in around 47,000 confirmed registrations, of which around 30,000 (invasive and selected non-invasive tumours) are included in the annual publications. In 1997, the registry was extended to include further information on tumours and treatments.

    The Scottish Cancer Registry receives electronic notification of cancer registrations from a variety of sources including hospital inpatient records (SMR01) and the National Records of Scotland. The Registry covers all residents in Scotland that have had a diagnosis of cancer. Regional Cancer Registries collect similar information for England and Wales, which is collated by the Office for National Statistics. In Northern Ireland, the Northern Ireland Cancer Registry based in Queens University does likewise on behalf of the Public Health Agency.

    Cancer registrations are available to researchers once the data have been published, approximately a year after the end of the calendar year of registration. The time delay is necessary for the confirmation of a cancer registration and the accrual of treatment information.

    The dataset is part of a wide range of health related administrative data collected by the Information Services Division (ISD), on behalf of the NHS National Services Scotland (part of NHS Scotland). ISD has been the authoritative source of Scottish national healthcare statistics for over 50 years. The data is used to enhance decisions about Scottish health care to improve the health of the people of Scotland. ISD is part of the SHIP (ScottisH Informatics Programme), a Scotland wide research platform for the collation, management, dissemination and analysis of Electronic Patient Records. As part of SHIP, ISD delivers Electronic Data Research and Innovation Service (eDRIS), a one stop shop for health research designed to provide a single point of contact and to assist researchers in study design, approvals and data (non-patient or patient identifiable) access in a secure environment (the NSS National Safe Haven).

    Within the Scottish Cancer Registry, the following geographical classes are available:

    • NHS Board of Residence
    • Council Area
    • Local Government District
    • UK Parliamentary Constituency
    • Scottish Parliamentary Constituency
    • Electoral Ward
    • NUTS
    • Community Health Partnership
    • Data Zone
    • 2001 Census Output Area
    • 1991 Census Output Area
    • Postcode
    • Grid References
    • Urban / Rural Codes
    • Scottish Index of Multiple Deprivation measures
    • Carstairs Deprivation 2001
    • Carstairs Deprivation 1991

    On April 1st 2006 the configuration of NHS Boards was changed with NHS Argyll & Clyde being dissolved. The larger part of its area moved into NHS Greater Glasgow with the remainder moving to NHS Highland.

    Cancer registrations are coded using the International Statistical Classification of Diseases and Related Health Problems (ICD), and the International Classification of Diseases for Oncology (ICD-O). The timing of use by the Scottish Cancer Registry of the updated versions of ICD and ICD-O for registrations is as follows:

    • Up to 31/12/1996: ICD-9 and ICD-O(1) morphology codes. Records prior to this date have been mapped to ICD-9 and ICD-O(1).
    • Between 1/1/1997 to 31/12/2005: ICD-10, ICD-O(2) site and ICD-O(2) morphology codes.
    • From 1/1/2006 to present: ICD-10, ICD-O(2/3) site and ICD-O(3) morphology codes.

    Over time, the three main changes in classification and coding affect bladder tumours, ovarian tumours, and some haematopoietic neoplasms. Benign brain and spinal cord tumours were added to the registry in January 2000.

    Scottish Cancer Registry data quality is monitored using routine indicators, computer validation and ad hoc studies of data accuracy and completeness of ascertainment. Data assurance is also achieved through data exchange with specialist tumour registries such as the UK National Register of Childhood Tumours.

    From 1997, data on ethnicity was also included in the registry but has always been poorly recorded with over 50% of cases recorded as ‘unknown’ ethnicity.

    Routine indicators of cancer registry data quality generally (and advice on their interpretation) can be found in the International Agency for Research on Cancer (IARC) monographs, Cancer Incidence in Five Continents.

    Data quality indicators for all of the registries in the UK are also available from the UK Association of Cancer Registries (UKACR) website.

    There are no known, major systematic data quality issues, but it is always wise too for researchers unfamiliar with the data to check with their data suppliers and to raise any questions about the data with suppliers when the analyses are performed. Note that, in general, more recent data from ISD is likely to be of higher quality than that of, say, the 1960s.

    Research Usage and Linkage

    The Scottish Cancer registry dataset is used for a wide variety of purposes by NHS Scotland including public health surveillance, health needs assessment, planning and commissioning cancer services, evaluation of the impact of interventions on incidence and survival, clinical audit and health services research, epidemiological studies and providing information to support genetic counselling and health promotion. 

    The dataset is used for a wide variety of health and epidemiological research purposes. More detail on the contribution of cancer registries to improvement of cancer services is described on the website of the UK Association of Cancer Registries. Furthermore, the UK Cancer e-Atlas is a web application that displays summary data on 16 of the most commonly occurring cancers in the UK broken down by incidence, mortality and survival by country, cancer networks and health boards. 

    Completeness of the patient Community Health Index (CHI) number influences the ability to link data to other indexed datasets deterministically. In the most recent few years completeness is over 99%, and has been over 90% since 2005, an improvement from around 56% in 2000.

    The Scottish Cancer Registry is also part of ISD Scotland’s linked database known as the Scottish Morbidity Database. The database links together the ISD inpatient and day case (SMR01), mental health (SMR04), and the National Records of Scotland Death Records with the Scottish Cancer Registry.

    The Scottish Health Survey provides a detailed picture of health of the Scottish population and researchers can also apply to use a linked Scottish Health Survey and Scottish Morbidity Database dataset.

    The Scottish Longitudinal Study (SLS) provides a detailed picture of the health and social status of the people of Scotland. The SLS can be linked to the Scottish Cancer Registry and other NHS Scotland health administrative datasets.

    The ISD Scotland Medical Record Linkage team could potentially link the Scottish Cancer Registry with other external data sources, and PAC approval will be required if using patient identifiable data. For example, Registry data is linked to cancer screening programme records for specific projects.


Coverage, universe, methodology

Time period:
1958 -
Country:
Scotland
Observation units:
Individuals
Kind of data:
Individual (micro) level
Universe:
National
Scottish residents when they are diagnosed with malignant (and some benign) tumours from 1958.

Time dimensions:
Repeated cross-sectional study
Sampling procedures:
No sampling (total universe)
Number of units:
1,400,000 records (currently approximately 47,000 records of primary invasive and non-invasive cancers are added each year)
Method of data collection:

Compilation or synthesis of existing material

The Scottish Cancer Registry receives electronic notification of cancer registrations from a variety of sources including hospital inpatient records (SMR01) and the National Records of Scotland.


Frequency of release:
Annual
Data Updated:
Continuously

Administrative and access information

Copyright:
Crown copyright
Access conditions:
ADRN
Availability:
Contact the Network

Documentation


Publications

By principal investigator(s):

  • ISD Scotland (2003) Anonymisation and NHS Scotland National Data Sets, ISD Scotland.
  • Campbell, J., Wallace, W.H., Bhatti, L.A., Stockton, D.L., Rapson, T., Brewster, D.H (2004) Childhood Cancer in Scotland., Information & Statistics Division, NHS Scotland.
  • Scottish Health Informatics Programme (2012) A Blueprint for Health Records Research in Scotland, Scottish Health Informatics Programme.

Resulting from secondary analysis:

  • Stockton, D., Doherty, V.R., Brewster, D.H. (2001) 'Risk of cancer in patients with dermatomyositis or polymyositis, and follow-up implications:', British Journal of Cancer, 85(1), pp. 41-45. 10.1054/bjoc.2001.1699
  • Parker, M.C., Wilson, M.S., Menzies, D., Sunderland, G., Thimpson, J.N., Clark, D.N., Knight, A.D., Crowe, A.M. (2005) 'Colorectal surgery:', Colorectal Disease, 6(6), pp. 506-511. 10.1111/j.1463-1318.2004.00709.x
  • Brewster, D.H., Stockton, D.L., Dobbie, R., Bull, D., Beral, V. (2005) 'Risk of breast cancer after miscarriage or induced abortion:', Journal of Epidemiology and Community Health, 59, pp. 283-287. 10.1136/jech.2004.026393
  • MacDonald, A., Straughn, J., Sutton, M. (2006) 'Healthy life expectancy measurement in Scotland'.
  • Camidge, D.R., Stockton, D.L., Frame, S., Wood, R., Bain, M., Bateman, D.N. (2007) 'Hospital admissions and deaths relating to deliberate self-harm and accidents within 5 years of a cancer diagnosis:', British Journal of Cancer, 96, pp. 752-757. 10.1038/sj.bjc.6603617
  • Ford, I., Murray, H., Packard, C.J., Sherpherd, J., Macfarlane, P.W., Cobbe, S.M. (2007) 'Long-Term Follow-up of the West of Scotland Coronary Prevention Study', New England Journal of Medicine, 357(15), pp. 1477-1486. 10.1056/NEJMoa065994
  • Hanlon, P., Lawder, R., Elders, A., Clark, D., Walsh, D., Whyte, B., Sutton, M. (2007) 'An analysis of the link between behavioural, biological and social risk factors and subsequent hospital admission in Scotland', Journal of Public Health, 29(4), pp. 405-412. 10.1093/pubmed/fdm062
  • Shack, L.G., Rachet, B., Brewster, D.H., Coleman, M.P. (2007) 'Socioeconomic inequalities in cancer survival in Scotland 1986-2000', British Journal of Cancer, 97, pp. 999-1004. 10.1038/sj.bjc.6603980
  • Anandan, C., Elton, R., Hitchings, A., Brewster, D.H. (2008) 'Nasopharyngeal cancer incidence and survival in Scotland, 1975-2001', Clinical Otolaryngology, 33(1), pp. 12- 17. 10.1111/j.1749-4486.2007.01590.x
  • Hamer, M., Chida, Y., Molloy G.J. (2009) 'Psychological distress and cancer mortality', Journal of Psychosomatic Research, 66(3), pp. 255-258. 10.1016/j.jpsychores.2008.11.002
  • Maddams, J., Brewster, D., Gavin, A., Steward, J., Elliott, J., Utley, M., Moller, H. (2009) 'Cancer prevalence in the United Kingdom:', British Journal of Cancer, 101, pp. 541-547. 10.1038/sj.bjc.6605148
  • Doherty, V.R., Brewster, D.H., Gorman, D. (2010) 'Trends in skin cancer incidence by socioeconomic position in Scotland, 1978-2004', British Journal of Cancer, 102, pp. 1661-1664. 10.1038/sj.bjc.6605678
  • Gray, L., Batty, G.D., Craig, P., Stewart, C., Whyte, B., Finalayson, A., Leyland, A.H. (2010) 'Cohort Profile: The Scottish Health Surveys Cohort:', International Journal of Epidemiology, 39(2), pp. 345-350. 10.1093/ije/dyp155
  • Sharpe, K. H., McClements, P., Clark, D.I., Collins, J., Springbett, A., Brewster, D.H. (2010) 'Reduced risk of oestrogen receptor positive breast cancer among peri- and post-menopausal women in Scotland following a striking decrease in use of hormone replacement therapy', European Journal of Cancer, 4695, pp. 937-943. http://dx.doi.org/10.1016/j.ejca.2010.01.003
  • Bosetti, C., Scelo, G., Chuang, S., Tonita, J.M., Tamaro, S., Jonasson, J.G., Kliewer, E.V., Hemminki, K., Weiderpass, E., Pukkala, E., Tracey, E., Olsen J.H., Pompe-Kirn V., Brewster D.H., Martos C., Chia K., Brennan P., Hashibe M., Levi F., La Vecchia C. and Boffetta P. (2011) 'High constant incidence rates of second primary cancers of the head and neck:', International Journal of Cancer, 129(1), pp. 173-179. 10.1002/ijc.25652
  • Brewster, D.H., Bansal, N., Bhopal, R., Fischbacher, C., Chalmers, J., Povey, C., Mueller, G., Steiner, M., Brown, H. (2011) 'Cohort Profile:', International Journal of Epidemiology, 40(5), pp. 1168-1175. 10.1093/ije/dyq118
  • Brewster, D.H., Clark, D.I., Sotckton, D.L., Munro, A.J., Steele, R.J.C. (2011) 'Characteristics of patients dying within 30 days of diagnosis of breast or colorectal cancer in Scotland, 2003-2007', British Journal of Cancer, 104, pp. 60-67. 10.1038/sj.bjc.6606036
  • Evans, J., Atherton, I., Dibben, C.J.L., Hubbard, G. (2011) 'The health and well-being of people with a previous diagnosis of cancer:', Journal of Public Health and Epidemiology, 3(10), pp. 429-432.
  • Lawder, R., Grant, I., Storey, C., Walsh, D., Whyte, D., Hanlon, P. (2011) 'Epidemiology of hospitalization due to alcohol-related harm:', Public Health, 125(8), pp. 533-539. 10.1016/j.puhe.2011.05.007
  • Oliphant, R., Brewster, D.H., Morrison, D.S. (2011) 'The changing association between socioeconomic circumstances and the incidence of colorectal cancer:', British Journal of Cancer, 104, pp. 1791-1796. 10.1038/bjc.2011.149
  • Satsangi, J. (2011) 'Nationwide linkage analysis in Scotland to assess mortality following hospital admission for Crohn's disease:', Alimentary Pharmacology and Therapeutics, 35(1), pp. 142-153. 10.1111/j.1365-2036.2011.04906.x
  • Williamson, A.E. (2011) Patients repeatedly removed from GP lists:, PhD thesis, University of Glasgow.
  • Atherton, I.M., Evans, J.M.M., Dibben, C.J.L., Woods, L.M., Hubbard, G. (2012) 'Differences in self-assessed health by socioeconomic group amongst people with and without a history of cancer:', Journal of Cancer Survivorship, 6(4), pp. 458-467. 10.1007/s11764-012-0226-x
  • McFarlane, H.J., Girdwood, I., Bhaskar, A., Clark, D., Webster, N.R. (2012) 'The influence of surgery on the onset of symptomatic coronary artery disease', Anaesthesia, 67(2), pp. 110-114. 10.1111/j.1365-2044.2011.07019.x
  • Teckle, P., Hannaford, P., Sutton, M. (2012) 'Is the health of people living in rural areas different from those in cities?', BMC Health Services Research, 12(43). 10.1186/1472-6963-12-43


Page last updated: 20/09/2017