In general, participants thought that accurate recording of ethnicity data was important. The majority were proud of their origins and were familiar with the differences between their's and other cultures, and understood the potential utility of such data in a healthcare setting. Several were also aware of the increased prevalence of certain diseases in minority ethnic groups and stated this as a reason supporting ethnicity data collection in a healthcare setting:
• "Sometimes it is helpful to provide ethnicity as it helps care providers understand our background and determine common illnesses due to dietary habits or genetic findings... However, we should be told why it is being collected when asked for it" [Punjabi female]
• "Sometimes certain illnesses are directly linked to our ethnicity... For example stroke or diabetes..." [Urdu female]
• "... say you have diabetes, they want to know how many Bangladeshis suffer from diabetes, why they suffer from diabetes; how many Pakistanis, how many Somalis. Later they total up these figures to obtain another figure - the percentage for South East Asians altogether..." [Bengali male]
A number of participants mentioned the importance of monitoring access and uptake of services whilst others mentioned the need for collection of ethnicity for future planning. Younger participants in particular felt that it was acceptable to provide ethnicity data for health purposes but not for other reasons such as job applications:
• "It could be alright with diseases but when you have to give this information while applying a job it would be felt like discrimination..." [Urdu female]
• "It differs according to situation like if we are going for health service then it is acceptable as we are also getting some services in return but I don't see any point of providing information for employment purposes" [Urdu male]
A small proportion (4 out of 36) did not understand the need for ethnicity data collection as they did not think it was relevant to treatment, or felt that they may be discriminated against if ethnicity was given:
• "Because ethnicity should never be a deterrent or an incitement when it comes to service or health provision so there's no reason for why it should be collected" [Mirpuri female]
• "Because we are all human and the same and so our ethnic origin should not interfere with the care we receive..." [Punjabi female]
• "It is important for government point of view but there is no importance from our point of view" [Urdu male]
When asked whether they had any objections or worries about providing ethnicity data the majority had no objections. Several had concerns related to feelings of discomfort if the purpose of data collection was not fully explained, and expressed fears of being stereotyped. There was dissatisfaction that the appropriate ethnicity category sometimes did not appear on the form, and there was also a feeling the data would not be utilised. One participant did not think discrimination was a problem given the multi-cultural make-up of the NHS workforce:
• "I feel uneasy sometimes and you start wondering why they ask me questions about my ethnicity" [Urdu male]
• "Sometimes patients may not be treated as individuals, we may judge by ethnicity and assume they have this problem as its high in their group" [Mirpuri female]
• "My only problem is when the category is not available on a form, e.g. British Asian, I very rarely see this category. However, I have no problems as the information is confidential and most of the time nothing is done with information apart from stored on their files for years to come" [Punjabi female]
• "The NHS is so large with multi-cultural staff that I am not concerned I will be discriminated if my ethnicity is collected. However, I feel they should tell us when the information is collected and what it will be used for" [Punjabi female]
2. Experiences of providing ethnicity information
In general, when asked about their experience of providing information about their ethnicity, the majority of people found it acceptable. Others expressed dissatisfaction about being asked to provide their ethnicity on repeat visits. The majority wanted some explanation as to why the data was being collected and what use it would be:
• "No one tells us why are they asking such questions and I feel they should tell me why do they need this information" [Urdu male]
The main reason given for negative experiences was inappropriate codes for recording ethnicity and the fact that on several forms they would be coded as 'other', which led to feelings of frustration and insignificance:
• "When I have to state 'Other' as my ethnicity is not on the form and I feel even now my origin is not widely recognised" [Punjabi male]
• "Most forms did not differentiate Asians, as Asian can be different groups, and not just Pakistani, not just Chinese, also people are living in Kashmir part of Pakistan do not like calling themselves Asian Pakistani, but want to be grouped as Asian Kashmiri, and recently that has been acknowledged" [Mirpuri female]
None of the participants had an objection to providing ethnicity information in a healthcare setting. However, there was some confusion about ethnicity data collection procedures in healthcare and the need for standardisation:
• "Sometimes they ask these questions about ethnicity and sometimes they do not so we are not sure what is the standard routine" [Urdu male]
• "My child was born in the same hospital yet they ask ethnic data about him whenever I took him to hospital" [Urdu male]
3. Categories used in practice
When discussion was focused on categories used in practice to describe individuals, many participants wanted country of birth, language and religion to be collected, in order to be able to distinguish between 'South Asians'. One participant thought that additional information on diet was useful; another participant also thought it would be helpful if individuals were asked whether or not they wanted to be donors:
• "The current ones are fine but language would be good as there are cultural differences depending on what language you speak" [Punjabi male]
• "My background is I am from Bangladesh, so British Bangladeshi, this is fine. My son was born and brought up here, so he will say British - that's it" [Bengali male]
• "British Bangladeshi gives them accurate information for research [this was supported by two more participants]. For political reasons I say 'British Muslim', When it comes for ethnicity for medical research I would say British Bangladeshi" [Bengali male, most of the others in the group agreed with him]
• "The ethnicity should not be confused with the colour of the skin" [Urdu female]
4. Language, religion and culture
Overall, all participants were happy to disclose their religion and language as long as they did not perceive that they were being stereotyped. The discussion on culture centred on religion being a better indicator of culture than 'ethnic group'.
• "I have been asked, I have provided only because I'm not ashamed of my religion and whether I mind would depend on why I'm being asked" [Mirpuri female]
• "I would not hesitate to describe my language as Bengali, no reason to feel "sonkuchito" ["sense of shame"- others agreed with him]" [Bengali male]
• "Religion should be a part of ethnicity because that is the base of one's lifestyle and dietary requirements. We do not know if the medicines we are taking are in accordance with the dietary requirements of our religion e.g., most of the cough medicines may have alcohol in them" [Urdu female]
• "Language is important because sometimes an interpreter may be required..." [Urdu female]
Some Muslims did feel that they were stereotyped, especially with the heightened awareness of terrorism:
• "Fear of stereotyping is there. Any brown complexion person may be called a Paki or a girl with head scarf may be labelled a terrorist. This is the main fear of disclosing one's origin" [Urdu female]
• "There is always that risk in everyday life, but I guess people are far too busy with other duties to take notice" [Mirpuri female]
• "Yes, I feel that I am regarded as a vulnerable women because I am a non-English speaking person" [Punjabi female]
• "I am not Pakistani, I am a Bangladeshi. Because of my colour and appearance someone is calling me "Paki". This is stereotyping" [Bengali male]
• "The suspicion is that all Muslims are terrorist. This is a stereotyped view. This kinds of stereotype views should not be allowed" [Bengali male]
Stereotyping by healthcare staff was also an issue for some participants:
• "Walk-in centres provide independent advice but I feel my GP knows my family history so makes assumptions about me" [Punjabi male, participant 3]
5. How should information be collected?
The Bengali focus group summarised how information should be collected:
• "They should explain why they collect the data; the reason behind it; what benefit there will be for people. Also, where the data will be used and how secure this data will be. It should be kept secret [confidential]" [Bengali focus group; all participants]
Most participants agreed that GPs should collect ethnicity data once and that this should be available to hospitals. There was a general consensus that not enough information is provided as to the use and importance of this data. When asked about routine data collection there was a strong feeling that the data should not be collected every time as information relating to ethnicity is not likely to change very often if at all e.g. religion:
• "No way. There is no need for routine collection. If it really has to be it only needs to be collected once at each institution" [Mirpuri female, participant 1]
• "The information should be collected at the GP surgery as patients are already distressed in hospital" [Punjabi female, participant 1]
In summary, the majority of focus group participants had no objections to providing the data but a brief explanation of the reasons for the data collection was considered highly desirable.