Equality Monitoring Data in Research - Insights from our Facilitated Discussion

The webinar was chaired by our Community Engagement & Inclusion Manager, Barbara Czyznikowska with presentations from Julian Harrison (Equality, Diversity and Inclusion Consultant),  Ash Routen (Research Fellow) and Laura Gray (Data2Health Theme Lead).

A Q&A session was held, with key discussion points summarised below:

• Enhancing the diversity and quality of health in five ways:

A data paper was published recently, here. Access to this paper can be requested via Ash Routen ar516@leicester.ac.uk

• Data Collection:

The importance of informing individuals why it is important to collect data, while offering reassurance.

• Involving people:

More participatory approaches were suggested, alongside better terminology and phrases while the fear of asking questions needs to be considered. The discussion emphasised the importance of tailoring studies to meet the specific needs of the targeted location, ensuring both relevance and applicability, alongside the importance of data in advancing research while enhancing future health and social care services. When communicating the reasons for taking part in research or providing equality data, it was suggested that researchers need to highlight how their data will make an important contribution to research, while making a difference to how health and social care is delivered in future.

• Sharing good practice: 

The importance of sharing good practice was mentioned, through a dedicated session.

• Looking beyond the 2021 census:

It was agreed there must be an understanding of consistency of concepts, and a shared common language. This language must be consistent across different regions in the UK, using ONS standards rather than international standards as a framework. It was noted that there should be better standardisation in the UK.

• Self-identification:

Some variations of equality monitoring forms have free text options. Both socio-economic background and religion are of importance. Large variations of ethnicity and religion were noted as examples, resulting in large intersections across varying identities.

• Health Inequity:

One speaker commented on disproportionalities and the importance of reviewing age, gender and disability. It was recognised that there are complexities in some categories.

• Gender identity:

This is a sensitive area, so must be considered carefully. There may be need for a future seminar on this area.

• Engaging with communities with different identities:

There was a suggestion to include different aspects of identity in equality monitoring.

• Trust around completing equality monitoring forms: 

There were shared experiences of research participant exclusion, due to trust. It was agreed this can be challenging. Conversations to reassure individuals would be helpful to explain why questions are explained in a certain way. It was suggested that identities should not be listed; instead, to perhaps ask participants to self-identify as a free text option. Such changes may help to reduce the loss of research participants.

• Exclusion of non-English speaking participants: 

It was noted that this is common within equality impact assessments and should therefore not be an exclusion criteria for research.

• Inclusion and the NIHR:

This should be built into all types of studies, following recent guidance from the NIHR. Concerns on the financial impact of this were expressed.

• Interpreters:

It may be easier to obtain interpreters for certain studies, depending on the context of research being carried out. A first language question is included as an option on the equality monitoring form.

• Making information accessible:

We must be mindful of D/deaf individuals who use British sign language while making an important effort to make any information accessible.

• EDI Resources page

A newly created archive of our EDI resources can be found here:

• Archive of past events

All of our NIHR ARC East Midlands webinars, toolkits and presentations can now be found here: 

• Cultural Competence Training

Training delivered by The Centre for Ethnic Health Research can be accessed here:

Stay connected

To stay informed about future webinars and initiatives, follow us on X @ARC_EM and @EthnicHealthRes, subscribe to our newsletter, and join the conversation using the hashtag #EqualityInResearchMatters.