22 June 2023
Administrative data is about the public. When it is used for research, there is a duty to engage the public in how their data is being used. In this blog we hear directly from three members of the public, who provide their perspectives on the use of ethnicity in research using health and administrative data.
Lavin, Behnam and Rakiba, members of the Coram Young Citizens, discuss and reflect on their experience taking part in a series of focus group discussions with young people from a refugee and asylum-seeking background. This is part of research led by UCL PhD student Joseph Lam (Jo), which aimed to understand their perspectives on the use of ethnicity in research using health and administrative data.
The focus groups included 10 young people originally from Nigeria, Sudan, Syria, Iran, Kurdistan and Iraq. They attended two sessions in which they discussed the following questions:
- What is ethnicity? How should ethnicity be asked inclusively and be better recorded?
- Does ethnicity change over time and context? If so, why?
The problem of categorising ethnicity, as told by Behnam and Rakiba
Behnam: Mixed groups are often faced with difficulties in recording their ethnicity due to societal pressure to identify with a single race or ethnicity. They are given limited options that they either have to identify by their skin colour or the continent they’re from, and this mainly affects people of colour. For example, an Arab person can be identified as Arab, Asian or other.
Rakiba: One solution we discussed is leaving the ethnicity option open and letting people identify with the description that suits them best to ensure inclusivity and diversity. It is important to allow participants to self-identify more flexibly, respecting and celebrating diversity and recognising that there is no one-size-fits-all approach to ethnic identity.
Behnam: I’m Iranian and in Iran we don’t have any different ethnicities. We don't use this word at all - we see each other as Iranian, but at the same time, we have different ethnic languages and accents. The language used in the UK to describe ethnicity did not immediately make sense to me.
Problems arise when we must tick a box. Some of the categories don't make sense to me, like “Irish traveller” or “other Arab”, and they seem to forget to include some ethnicities there. I would identify as "Asian: Iranian" but this isn't an option and usually I just choose "other".
Rakiba: Ethnicity is a personal identity, and it is up to everyone to decide how they identify and what ethnicity means to them. In the beginning when I first came to the UK, I used to identify myself as two ethnicities - Irish and Syrian – in legal documents. However, the process of gathering evidence and legal documents to prove my identity was challenging. As my Syrian documents have expired, I’d rather identify as Irish only for a peace of mind and to avoid the fees, extra questions and extra evidence I would need to provide to identify as Syrian.
Changes in ethnicity over time, as told by Lavin
Lavin: Living in a different region can expose a person to a different language, lifestyle, and culture, ultimately impacting their sense of identity. For example, if someone from an African country moves to the United States and learns to speak English fluently and adapts to American culture, they may no longer identify solely as African but rather as African American.
At present, when someone’s ethnicity record is different across data sources, or over time, most researchers deal with it by choosing the most recent or most commonly reported ethnic categories. These methods assume that ethnicity does not change over time. However, it is important to acknowledge that these methods may not work for everyone, and that individual experiences and identities may not fit neatly into existing categories. To address this, researchers should be asking more specific questions to explore potential reasons for a changing ethnicity, and how it could impact health.
This is a topic I had never considered before, but after listening to the other participants' ideas and thoughts, we have concluded that ethnicity can change over time.
Migrants and non-migrants’ lived experience of ethnicity is not fully inter-changeable, even if they share the same census ethnic category. Researchers should communicate clearly how ethnicity is operationalised for their studies using linked administrative data, with appropriate justification for clustering and analysis that is meaningfully theorised.
This work was supported by funding from the Wellcome Trust (212953/Z/18/Z) and a UCL Engagement Beacon Bursary. Young Citizens is Coram's award-winning programme for 16–25-year-olds from migrant and refugee backgrounds who make a difference to the lives of other young people new to the UK through direct work, improving practice and policy change. This is a young-persons-led blog.