Over 17 years, our research team has identified disparities in healthcare experienced by minority ethnic groups in rheumatology, resulting in poorer health outcomes and increased service utilisation. The current one-size-fits-all healthcare approach exacerbates these disparities. In a groundbreaking effort, we convened a multidisciplinary team consisting of patients, families, patient organisations (e.g., National Rheumatoid Arthritis Society - NRAS), clinicians, community leaders, and the City Council. We successfully implemented innovative solutions based on our research, warranting recognition. We are making a shift from just medical organisations to the people they serve.
Background
Coping with an unpredictable chronic disease accompanied by complex and cytotoxic treatments presents a challenge for patients. And even more dauting task for people living with rheumatic inflammatory conditions such as rheumatoid arthritis (RA) or lupus is simultaneously balancing professional commitments, family responsibilities, and financial burdens. Not surprisingly, individuals often find themselves lacking the energy to effectively address and engage with their disease symptoms. Adopting a "one-size-fits-all" approach does not facilitate the achievement of desirable clinical outcomes. Through my research endeavours, I together with a team have diligently ensured that the motivation behind this work is harnessed, thereby establishing a fair and equitable platform for individuals from minority ethnic backgrounds to gain greater control over their healthcare outcomes. So, you might ask what the main issues are and how have I and team contributed towards addressing these so far through our research.
Let me take you on that journey and here we present some key publications. A full list of publications can be provided upon request.
1. Pertains to the under-recognition of rheumatic inflammatory diseases as a prevalent yet preventable cause of long-term health consequences and disability among different age groups in the United Kingdom. Notably, there is a lack of awareness regarding these conditions among individuals from minority ethnic populations. To address this issue, I together with the team conducted an in-depth investigation focusing on the awareness of symptoms and its link to delay in diagnosis [1] and explored the underlying reasons for the reluctance to seek medical assistance during the early stages of disease onset [1]. Comprehensive details regarding this research can be found at the following publication:
https://impact.ref.ac.uk/casestudies/CaseStudy.aspx?Id=38792
/https://bmjopen.bmj.com/content/9/3/e024361
2. Involves the timely initiation of treatment and coordination of services across various healthcare sectors, which have the potential to enhance patient experiences and improve clinical outcomes [2, 3]. However, as mentioned above there are noticeable delays among individuals from minority ethnic backgrounds in presenting their symptoms to general practitioners (GPs). Moreover, patients of South Asian background tend to develop symptoms at a younger age compared to their White counterparts [4].
https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-022-02544-
5 / this means attention has to be paid at the early stages of the clinical journey to engage patients [5]. Additionally, we have now cumulated evidence that patients from Black and Asian backgrounds have inequitable care in the early stages of the disease [5]. To delve deeper into this issue, I convened a collaborative group aimed at investigating the contributing factors in greater detail. For further insights into this research, please refer to the following: https://www.hqip.org.uk/wp-content/uploads/2022/01/NEIAA-ethnicity-report.pdf / . Separately, my work highlighted that people from minority groups were more likely to stop work because of their rheumatic inflammatory disease[3]; https://pubmed.ncbi.nlm.nih.gov/34092136/ similar patterns were shown in the work conducted in India with our team [6]; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6988515/
3. Revolves around the insufficient provision of services tailored to the needs of individuals from minority ethnic backgrounds throughout rheumatology centres in England, consequently hindering their full comprehension and engagement in understanding diagnosis, treatments, and self-management. As mentioned above this is important to improve for optimal clinical outcomes [5]. In collaboration with the National Rheumatoid Arthritis Society and Lupus UK, I spearheaded the establishment of a platform designed to assist non-English speaking patients in effectively participating in their healthcare journey. Additional information about this initiative can be accessed through the following; www.nras.org.uk/apnijung / https://www.lupusuk.org.uk/yeh-hai-lupus/ . Quick recognition that a one-size-fits-all approach was leading to poor medication adherence and outcomes [7]; https://pubmed.ncbi.nlm.nih.gov/26714853/ I set up a collaborative effort was established with the National Rheumatoid Arthritis Society (NRAS), under the guidance of Mrs. Ailsa Bosworth (past CEO). The objective was to establish a dedicated webpage within NRAS that would serve as an educational platform, providing comprehensive information about rheumatoid arthritis (RA), emphasising the significance of medication adherence, early treatment, and self-management strategies. This initiative, named Apni Jung (translated as "our fight against") RA, was specifically designed to cater not only to patients who face language barriers, but also to individuals born in the UK who may have non-English speaking parents, thus facilitating education for the entire family unit. Currently, the focus of my research has shifted towards developing interventions. As an illustrative example of the innovative additions made to the webpage, a cardiovascular disease (CVD) educational video was recently created for individuals living with RA or lupus again because we found there was lack of knowledge about CVD risk in people of South Asian origin [8]. This video aims to enhance awareness of comorbidities and provide guidance on their management (www.nras.org.uk/apnijung).
4. Pertains to the inadequate proficiency of healthcare professionals in rheumatology when it comes to engaging with individuals from minority ethnic populations, leading to suboptimal consultations and unfavourable outcomes. After conducting thorough research on the insufficient training of clinicians; https://academic.oup.com/rheumap/article/3/2/rkz042/5609125 I conducted an investigation to identify the areas of inadequacy and sought input from clinicians on potential solutions [9]. With the support of a grant, we undertook the development and testing of a culturally sensitive training intervention in four NHS centres, aiming to enhance the skills of clinicians and provide them with support when interacting with minority ethnic populations during clinic sessions. This endeavour encompassed the collection of before - and after -training data from clinicians' clinics. The findings exhibit promise (paper under review), and I am currently engaged in the process of collaborating with prominent rheumatology societies such as British Society for Rheumatology (BSR), European League against Rheumatism (EULAR), and others to integrate the programme into their educational strategies, thus making it an accredited offering to society. Furthermore, the outcomes of this initiative will be incorporated into the GIRTH (Global Initiative for Rheumatoid Arthritis) framework.
Mutual Benefit. How has the engagement affected the researcher(s), their approach, their practice or how they work with others?
I, along with my team, have led research on health disparities in individuals with rheumatic inflammatory arthritis, with a specific focus on the second-largest population in the UK, South Asians. Until 2003, there were only three papers examining ethnicity's influence on rheumatology practice in the UK. Since then, we have conducted extensive research, producing innovative solutions to address crucial issues. Our work has fostered collaborations with various stakeholders, including patients, community leaders, medical sociologists, economists, public health experts, behavioural scientists, occupational therapists, physiotherapists, and physiologists. We have been raising awareness and gaining traction in national and international societies such as the British Society for Rheumatology (BSR) and the European League Against Rheumatism (EULAR). Furthermore, our research and innovation aligns with NHS England's CorePLUS205 vision and NIHR's priorities in addressing musculoskeletal conditions and healthcare disparities based on ethnicity.