‘If relevant, yes; if not, no’: General practitioner (GP) users and GP perceptions about asking ethnicity questions in Irish general practice: A qualitative analysis using Normalization Process Theory

Abstract

Context The use of ethnic identifiers in health systems is recommended in several European countries as a means to identify and address heath inequities. There are barriers to implementation that have not been researched. Objective This study examines whether and how ethnicity data can be collected in Irish general practices in a meaningful and acceptable way. Methods Qualitative case study data generation was informed by Normalization Process Theory (NPT) constructs about ‘sense’ making and ‘engagement’. It consisted of individual interviews and focus group discussions based on visual participatory techniques. There were 70 informants, including 62 general practitioner (GP) users of diverse ethnic backgrounds recruited through community organisations and eight GPs identified through an inter-agency steering group. Data were analysed according to principles of thematic analysis using NPT. Results The link between ethnicity and health was often considered relevant because GP users grasped connections with genetic (skin colour, lactose intolerance), geographic (prevalence of disease, early years exposure), behavioural (culture/food) and social determinant (housing) factors. The link was less clear with religion. There was some scepticism and questions about how the collection of data would benefit GP consultations and concerns regarding confidentiality and the actual uses of these data (e.g. risk of discrimination, social control). For GPs, the main theme discussed was relevance: what added value would it bring to their consultations and was it was their role to collect these data? Their biggest concern was about data protection issues in light of the European Union (EU) General Data Protection Regulation (GDPR). The difficulty in explaining a complex concept such as ‘ethnicity’ in the limited time available in consultations was also worrying. Conclusions Implementation of an ethnicity identifier in Irish general practices will require a strong rationale that makes sense to GP users, and specific measures to ensure that its benefits outweigh any potential harm. This is in line with both our participants’ views and the EU GDPR.

Designing and testing an ethnic‐ancestry question for Australian blood donors: Acceptability, feasibility, and understanding

“…A majority of donors indicated that they found an ethnic‐ancestry option they were happy with (91.3%). When asked to indicate how easy it was to find an ethnic‐ancestry the were happy with, respondents reported a median score of 8 8–10 …”

“…When asked to indicate how easy it was to find an ethnic-ancestry the were happy with, respondents reported a median score of 8. [8][9][10] Only 43 donors (8.4%) reported that they did not find an acceptable ethnic-ancestry option. Of these, 11 reported their reason was having to select 'other' and write in their ethnic-ancestry, five reported not knowing their ethnic-ancestry, and 30 reported it was 'something else' with 28 providing a qualitative response.…”

“…As well as meeting our legal obligations, adequately explaining to donors why BCAs need this information may result in them being more comfortable about providing the information and therefore increased uptake. In their study exploring the perceptions of general practitioners and patients in Ireland, Roura et al 8 concluded that the implementation of an ethnicity question requires a strong rationale that makes sense to patients to ensure greater buy‐in. Similarly, in the study by Alfridi and Murji 9 exploring the quality and limits of ethnicity data collected by higher education and health services in England, participants suggested that low disclosure rates were, in part, due to a lack of confidence in what the data was being used for 9 .…”

JBI systematic review protocol of text/opinions on how to best collect race-based data in healthcare contexts

“…The historical harm of treating ‘race’ as having a biological basis and the potential for using ‘race’ to discriminate has led to hesitations or misperceptions for collecting data about patients’ ‘race’ or ‘ethnicity’ 9 10. For instance, healthcare providers perceive barriers to collecting demographic data, such as privacy and legal concerns, possible resistance from patients and staff, and difficulty recording the data 11–13. These attitudinal and practical barriers have led to the lack of clinic guidelines and less data collection.…”

Use of ethnic identifiers to narrow health inequality gaps

“… 2 , 5 Furthermore, in a recent qualitative study, Irish general practitioners raised fundamental doubts about its clinical relevance for individual consultations. 6 An additional reserve relates to the multifaceted concept of ethnicity, challenging sufficiently unambiguous operationalization. 7 This may all add to the catch-22 in the debate on health disparities: lack of clarity on the clinical relevance of ethnic identifiers impedes their further study, prohibiting in-depth understanding of their potential role in closing health disparity gaps.…”