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Equality data – mind the gap

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Blog posts

Duncan Buchanan

23 Feb 2023

A new equalities dataset for research draws upon anonymised records covering many of the protected characteristics for over six million people.

There was a time not that long ago when it felt like we were awash with data on the pandemic via daily updates in the media, dashboards, charts, surveys, even apps.

The data are less prominent and ubiquitous now, but, like COVID-19 itself, still in the background even if it’s less likely to attract the headlines.

Despite this abundance of data, the pandemic highlighted the need to have more and better data about the diverse characteristics of people to ensure our government and public services are equitable.

In April 2020, early into the first lockdown, reports were emerging from England that some ethnic minorities were being more severely impacted by the virus, for example based on data on those who had been admitted for intensive care. This led to questions being asked as to why there was no publicly available data on the impact of COVID-19 on different ethnic groups in Scotland.

Shortly after, an Expert Reference Group on COVID-19 and Ethnicity was established to advise the Scottish Government on response to the pandemic, with the lack of data a key focus for the Group.

A lack of data on disability status across the population also restricted the publication of statistics on the impact on people with disabilities. However, evidence has since appeared showing the extent to which people with disabilities were disproportionately affected during the pandemic, due to both the direct effects of the virus and the restrictions that were put in place to control the infection.

Over time, many publications and studies have reported the disproportionate impact of COVID-19 on different sections of the population, including minority ethnic groups, religious groups, the elderly and those living as socio-economically deprived areas.

But, as the Expert Reference Group and others have pointed out, it shouldn’t take so long to produce this evidence.  

A legacy of the pandemic must be that we have better systems in place in Scotland to collect data on the protected characteristics of the population that the public trust and value, and that are used to support the evidence and actions that improve lives.

“The pandemic highlighted the need to have more and better data about the diverse characteristics of people to ensure our government and public services are equitable.”

Duncan Buchanan, Head of Health Data Transformation, RDS

Data is patchy, poor quality or lacking

The commitment was already there in the shape of the Equality Act, a key piece of legislation passed in 2010 that protects people from discrimination across nine listed ‘protected characteristics’.

These characteristics are age, disability, gender reassignment, marriage/civil partnership, pregnancy/maternity, race, religion, sex and sexual orientation.

Public sector organisations have a legal duty to monitor their performance in tackling discrimination. In practice however, we know that many public sector organisations struggle to collect and maintain data on the protected characteristics of the population they serve.

Data is patchy, of poor quality, or often just missing entirely, and the Scottish Government has established an Equality Data Improvement Programme to help organisations with this.

A new equalities dataset for research

Work is underway on several fronts across the NHS and care sector, supported by Public Health Scotland and Scottish Government, to put systems in place to routinely collect better data, inform patients on why it is needed and build trust.

A key component in this drive is in making better use of the data that is already collected across the range of public services that people interact with.

That’s why RDS has been collaborating with Public Health Scotland, Scottish Government, National Records of Scotland and University of Edinburgh on a project to create a large-scale research dataset of protected characteristics to support public sector organisations and researchers to monitor the impact of services.      

This dataset contains anonymised records covering many of the protected characteristics for over six million people and used a method of securely linking records drawn from the Census, hospital admissions and annual school pupil census. Ethical considerations in the design of the dataset were assessed with the help from equalities groups and a public panel.

Safe and responsible use of the dataset is paramount, and the data are stored within the National Safe haven, an example of a Trusted Research Environment. Under the Administrative Data Research (ADR) Scotland programme and the Health Data Research National Core Studies programme, a significant number of datasets have been brought into the National Safe Haven. The Protected Characteristics Linkage Dataset will be brought into the National Safe Haven shortly and it will be listed as part of the ADR Scotland data catalogue.

People walking on Buchanan Street in Glasgow in the rain.
The equalities dataset will help support public sector organisations and researchers to monitor the impact of services on the Scottish public.

Why is this dataset important?

Good research using population-level datasets like this can highlight where inequality of uptake and outcome exists within our public services, and predict who is most at risk, and how these risks are impacted when subgroups interact.

It can help to shed light on the causes, preventative actions and systemic change that is required, and ensure progress is monitored.

In fact, the recent Scottish Government publication: ‘Greater access, better insight, improved outcomes: a strategy for data-driven care in the digital age’ singles out the dataset as playing a role in improving the ability of researchers to study issues of access to, and outcomes from, the health and social care systems for different protected characteristics.

Get in touch

If you are a researcher or in a public sector organisation with an interest in using the dataset to support your work on equalities, please contact us to register your interest. 

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