'If I Were White': a qualitative analysis of the experiences of minoritized ethnic groups with systemic autoimmune rheumatic diseases in the United Kingdom.

Abstract

Background: In the United Kingdom (UK), individuals of minoritized ethnic groups report poorer healthcare experiences and face disparities in health outcomes and access to healthcare services relative to their White counterparts. While it has been demonstrated that sociodemographic characteristics play important roles in the risk of developing rheumatic diseases, disease progression, and treatment journeys, there is limited understanding of the experiences of minoritized ethnic groups in the UK. This study aimed to investigate how the social and structural processes associated with ethnicity affect the medical experiences of people with systemic autoimmune rheumatic diseases in the UK.

Design: Qualitative data were collected between 2023 and 2025 through semi-structured interviews with N = 29 (36% South Asian, 86% female) patients and N = 16 (81% White, 50% female) clinicians. Analysis was thematic and involved immersion in the data, coding using NVivo, and discussion of themes with a multidisciplinary team including patient partners.

Results: Interviews generated three main themes: (1) subtle and systemic racism in care and society, (2) racialized medical and behavioural stereotyping, and (3) socio-cultural factors impacting doctor-patient communication and rapport building. Throughout each theme, participant recommendations for improving care were raised.

Conclusions: Our study demonstrated that the socio-structural processes related to ethnicity, namely racism, social deprivation, stereotyping and institutional bias, impact the medical experiences of SARDs patients in multitudinous ways. Some patients reported systemic and interpersonal racism, racialized stereotyping, and mistrust in care, while others listed factors that they considered were protective against discrimination, such as education and location. Socio-cultural factors, including language barriers and variations in clinician understandings of patient experiences, further impact doctor-patient interactions.