Custom Microdata Projects

Custom Microdata Projects

Researchers can apply to access individual census records (microdata) in a secure research facility for a specific research project, usually in order to link census records to another source of data.  The Administrative Data Research Centre (Scotland) coordinates and supports researchers’ applications for custom microdata projects.

Safeguards

Researchers can only access custom microdata for research when all of the following apply:

  • The data will only be used for research purposes
  • The data may not be used for automated decision-making
  • The data will not contain direct identifiers
  • The project has been approved by a research ethics panel
  • The project has been approved by an independent panel to consider the public benefit and privacy risks of the research
  • All researchers have been trained to handle personal data safely and appropriately
  • The researchers and NRS have signed a Data Sharing Agreement making them Joint Data Controllers for the extract of census data
  • The researchers have completed a Data Protection Impact Assessment assessing the privacy risks of the project
  • The researchers can only access the data inside an ADRC-S Safe Setting.

NRS will only agree to supply census data to an approved research project when we are confident that the project has adequate protection against disclosure of personal information, and that we are not providing more data or more detail than is required to address the research question.

The results of any data analysis can only be taken out of the secure research environment once a member of NRS or ONS staff has checked that they cannot be used to identify individual people or households.

Current projects

The following projects are currently using custom census microdata through the Scottish National Safe Haven:

Care in the last days of life – a data linkage study
Dr Iain Atherton and Dr Anna Schneider, Edinburgh Napier University

This project looks at the availability of care to people at the end of their lives, and how and why this differs between different groups in Scotland.

This study uses Scotland’s Census 2001 and 2011 records (including health and ethnicity data) for people who either died less than a year after completing a census form, or who were aged 70 or over on census date. The census records are linked to health records and environmental data.

Trends and sociodemographic patterning of active commuting
Dr Graham Baker and Dr Rebecca Pillinger, University of Edinburgh

This project looks at levels of active commuting (walking and cycling) to work and study in Scotland, and how active travel differs according to socio-demographic factors linked with health inequalities. The study includes an economic assessment of the health benefits of walking and cycling using the World Health Organisation’s HEAT tool (Health Economic Assessment Tool).

This study uses Scotland’s Census 2001 and 2011 records (including health and ethnicity data) protected by disclosure control, for all people who travel to work or a place of study.  This dataset is not linked to any other datasets.  

Understanding the interplay of geography and demographic characteristics in the diagnosis of eight common cancers: The NASCAR-CENSUS project
Dr Peter Murchie, University of Aberdeen

This project looks at how geography, affluence and deprivation affect cancer outcomes.

This study will use Scotland’s Census 2001 and 2011 data (including health, religion and ethnicity data) linked to health records for members of an existing health research cohort (the NASCAR study) made up of people diagnosed with one of eight common forms of cancer in the NHS Grampian health board area from 2007 to 2014.

Developing a national learning health system for asthma
Dr Colin Simpson, University of Edinburgh

This project aims to describe and explain patterns of asthma care across general practices and population sub-groups in Scotland, and to understand the role of weather and exposure to pollution on asthma outcomes.

This study will use 2001 and 2011 census data for people registered at one of around 100 GP surgeries in Scotland. These census records are linked to health records, and to meteorological data associated with each person’s home and work or study postcode.

Upcoming projects

The following projects have been approved to access custom census microdata through the Scottish National Safe Haven:

Childhood cognitive function and use of long-term care across the life course: Linking the Scottish Mental Survey 1947 to healthcare and administrative data.
Dr Matthew Iveson, University of Edinburgh

This project will investigate the association between early-life circumstances (cognitive ability and socioeconomic status) and the risk of entry into long-term care.

This study will use 2001 and 2011 census data (including health data) for people who participated in the Scottish Mental Survey in 1947, at the age of 11. These census records will be linked to health records, birth and death records, and care use records.

Childhood cognitive function and later-life recovery: Linking the Scottish Mental Survey 1947 to healthcare and administrative data.
Dr Matthew Iveson, University of Edinburgh

This project will investigate the association between early-life circumstances (cognitive ability and socioeconomic status) and recovery from stroke or cardiovascular disease.

This study uses 2001 and 2011 census data (including health data) for members of an existing research study who were born in 1936/7 and participated in the Scottish Mental Survey in 1947. These census records are linked to health records and birth and death records.

Predictors of mental ill health in mothers caring for a son or daughter with intellectual disabilities
Dr Deborah Kinnear, University of Glasgow

This study will investigate the prevalence and determinants of mental ill-health in mothers caring for a son or daughter with intellectual disabilities, both overall and at different stages of the caregiving trajectory.

This study uses 2011 census data (including health and religion data) for a sample of people who are recorded in the census as having a learning disability and living with their mother at the time of the 2011 census; their mothers; and a sample of similar women and children who do not have a learning disability, for comparison.  These census records are linked to health records and mortality data.

Predictors of mental ill health in and its determinants in fathers caring for a son or daughter with intellectual disabilities
Dr Deborah Kinnear, University of Glasgow

This study will investigate the prevalence and determinants of mental ill health in fathers caring for a son or daughter with intellectual disabilities, particularly with respect to neighbourhood deprivation and the age of the care receiver.

This study will use 2011 census data (including health, religion and ethnicity data) for fathers living with a son or daughter with intellectual disabilities at the time of the census. These census records will be linked to health records.

Does commuting affect health?
Dr  Zhiqiang Feng, University of Edinburgh

This study will explore different aspects of commuting: distance, traffic conditions, travel modes, and their association with health. This research aims to help inform health, transport and environmental policies.

This study will use 2001 and 2011 census data (including health and ethnicity data) for people who lived or worked in Aberdeen, Dundee, Edinburgh or Glasgow at the time of either census. These records will be linked to health records and to birth records from 2001 – 2016.

Regeneration, health, and health inequalities: a longitudinal data linkage study
Dr Elizabeth Richardson, NHS Health Scotland

This study will investigate the impact of urban regeneration projects on health and health inequalities, with the aim to help inform policy making.

This study will use data from the 2001 and 2011 census for people living within the area of the Clyde Gateway urban regeneration scheme and for a control group of people living in similar areas at the time of either census. These census records will be linked to health records and death records.

Social and locality variations in dog bites and strikes in Scotland
Jade Hooper, University of Stirling

This study will explore a range of possible factors which may contribute to the social patterning of dog bites, considered at both the area and individual level. This research aims to help inform policy for reduction of dog bites.

This study will use data from the 2011 census linked to dog population data and health records from dog bite incidents.

Scottish cervical screening and ethnicity
Dr Christine Campbell, University of Edinburgh

This study will investigate patterns of attendance to cervical screening according to ethnic group. Previous findings on bowel screening attendance according to ethnic group will also be updated. This research aims to provide an improved understanding of screening uptake and outcomes for all ethnic groups in Scotland.

This study will use data from the 2011 census (including health, religion and ethnicity data) for all females in the cervical screening programme age range (20 – 70) and all individuals in the bowel screening programme age range (50 – 74). This data will be linked to cervical and bowel cancer screening attendance data.

Socioeconomic outcomes measurement in survivors of major illness
Kenneth Haining, University of Edinburgh

This study will investigate how major illness impacts the lives of survivors in the long term, paying particular attention to use of health care, costs of said health care and an individual’s ability to stay in employment. This research aims to enable policy makers to assess cost effectiveness of health services and treatments.

This study will use data from the 2001 and 2011 census for people who were diagnosed with a major illness. This data will be linked to health records (for the period of 2001 – 2017) regarding admissions to critical care units (recorded in the SICSAG database) and diagnosis of cancer.

Health, death and cancers in people with learning disabilities and people with autism
Professor Sally-Ann Copper, University of Glasgow

This study will investigate health and health-care inequalities for people with learning disabilities, and autism, compared with others. This study aims to inform policy makers so that premature deaths associated with learning disabilities and autism may be reduced and avoided in the future.

This study will use data from the 2011 census (including health data) for people with learning disabilities and people with autism. This data will be linked to health records and death records.

Sharing custom census microdata with approved researchers

For each approved research project to access census microdata, NRS are sharing the extract of census microdata with the lead researcher on the project, making the lead researcher’s institution a Joint Data Controller.

Legal gateway

NRS is allowed to share personal census data with researchers for research because of section 4.2 of the Census Act (1920), which enables the Registrar General for Scotland to authorise the analysis of census data.

Joint Data Control

For each project, NRS and the lead researcher’s institution have signed or will sign a Data Sharing Agreement making them Joint Data Controllers of the dataset for that project.  This means that NRS and the researcher make joint decisions about how the data can be processed, including:

  •  who can process the data
  •  what are acceptable purposes for processing the data
  •  how will the data be processed
  •  where can the data be accessed
  •  what can be released.

Decisions can only be made with the agreement of both NRS and the researcher. Either party can end the agreement at any time, and if so the dataset must be destroyed.

Responsibilities

We have agreed with researchers that the Data Protection Officer for NRS will take responsibility for reporting to the Information Commissioner’s Office any problems or incidents which might put the confidentiality of personal information at risk.

Data Processors

Each lead researcher also holds a legally binding Controller – Processor Contract with eDRIS (the NHS electronic Data Resource and Information Service), who act as a data processor by providing the Scottish National Safe Haven service and managing the secure transfer, linkage and storage of the data. This Controller–Processor Contract allows eDRIS to contract the physical storage of the data to the Edinburgh Parallel Computing Centre, a facility of the University of Edinburgh.

Retention

Each project has a set end date, agreed at the start of the project.  The data will be securely and confidentially destroyed on this end date, or as soon as it is no longer required for the research project, whichever happens first.  Researchers may not retain custom census microdata for longer than five years.

Your rights as a data subject

The NRS Data Protection Officer is your point of contact for any concerns or questions about the confidentiality of your personal census data in the Secure Microdata Files from Scotland’s Census 2011.

You also have the right to report your concerns to the Information Commissioner’s Office (ICO). For more information visit the ICO website.

The GDPR grants individual data subjects certain rights, for example the right to access your personal data, the right to rectify incorrect data, the right to have your data erased, the right to restrict what can be done with your data and the right to object to the use of your data. However, these rights do not apply to the use of personal data for scientific or historical research purposes or statistical purposes, where responding to these rights would prevent the research or statistical purpose from being achieved.  NRS and the researchers have agreed that the Secure Microdata Files may only be used for scientific or historical research purposes, therefore these rights will not apply.

Personal census data is also exempt from Freedom of Information requests under the Freedom of Information (Scotland) Act 2002, and from Environmental Information requests, under the Environmental Information (Scotland) Regulations 2004.  This applies for 100 years after the data was collected.

We are not able to confirm whether or not your data is included in any particular census dataset, as this could put other peoples’ personal information at risk.

Changes to this privacy notice
We keep our privacy notices under regular review. This privacy notice was last updated on Friday 1 November, 2019.

Contact Information

NRS Data Protection Officer
HM General Register House
2 Princes Street
Edinburgh
EH1 3YY

Tel: 0131 535 1314

Email: dataprotection@nrscotland.gov.uk