Missing voices: why ethnic minority representation in patient organizations is a priority in rheumatology
Year: 2026
Type: editorial
Abstract: People living with systemic autoimmune rheumatological disorders require sustained, coordinated and culturally responsive support beyond episodic clinical care [1]. Ethnic inequalities in access, health literacy, language and culturally mediated beliefs about illness and treatment significantly shape engagement, adherence and long-term outcomes [2]. Although ethnicity data are not consistently captured across UK rheumatology services, evidence indicates persistent disparities [1]: while RA prevalence is similar or slightly lower in some South Asian populations compared with White populations, ethnic minority patients often experience higher disease activity, greater disability and reduced access to advanced therapies [1]; in SLE, prevalence is two to three times higher among people of African, Caribbean and South Asian heritage, with more severe organ involvement and hospitalization [3]. Longer diagnostic delays and lack of engagement in self-managing symptoms contribute to sustained outcome inequalities [1]. In this context, patient organizations (POs) constitute a critical yet under-recognized component of rheumatology care, providing culturally sensitive education, helplines, peer support and structured self-management programmes that help diverse communities navigate complex systems, treatments and optimize quality of life [4]. Rheumatology POs support not only patients but also families, carers, employers and communities, promoting understanding, workplace adjustment and societal awareness of chronic inflammatory disease [5]. Contemporary rheumatology services increasingly function within a broader ecosystem of care in which POs should be regarded as strategic partners [4]. Historically, however, they have often been peripheral to service design and pathway development. Although collaborative relationships with clinical teams have strengthened over recent decades, resulting in more systematic signposting from secondary care, POs remain insufficiently embedded within service structures [4]. Despite this progress, the public visibility and structural integration of rheumatology POs have evolved more slowly [5]. POs in areas such as oncology, diabetes and cardiovascular medicine have clear public visibility [6]. Conditions perceived as acutely life-threatening or aligned with national public health priorities have benefited from sustained policy focus, dedicated funding and strong advocacy [5]. By contrast, rheumatological diseases—despite substantial morbidity, treatment burden and impact on employment and participation—have attracted comparatively limited policy attention and resource allocation [5]. Limited public understanding of both these issues and the added contribution of rheumatology POs further constrains reach, particularly within underserved and minoritized communities [7]. Strengthening representation, equity and inclusive engagement within rheumatology POs is therefore central to achieving sustainable and equitable outcomes [7]. Against a backdrop of constrained visibility and resources, patient support is increasingly shaped by digital health [5]. In the UK, over 30 million people now use the National Health Service (NHS) App to access appointments, records and health information, reflecting growing integration of digital care pathways and creating opportunities to extend organizational reach, improve data capture and enhance access to peer and self-management resources [8]. However, digital expansion is not socially neutral: ∼1.5 million UK households still lack reliable internet access, underscoring persistent digital inequalities [8]. Without deliberate safeguards, innovation risks widening disparities, particularly in rheumatology where ethnic minority and socioeconomically disadvantaged populations already experience poorer outcomes [1]. Digital solutions alone are therefore insufficient; equitable engagement also requires strong community-based approaches. Rheumatology POs must strengthen their community presence to expand reach and address inequities. While funding constraints persist, models from other specialties—such as Khush Dil [9] and the NHS Diabetes Prevention Programme [10], which use community venues, translated materials and culturally adapted education—demonstrate effective strategies for engaging high-risk ethnic minority population. UK rheumatology POs provide high-quality information and support, yet their impact remains limited by underrepresentation of diverse communities. Moreover, international initiatives, including the Rheumatoid Arthritis Coordinated Health and Management Programme (RA-CHAMP) [11] and the Peer Approaches to Lupus Self-Management (PALS) programme in the USA [12], further illustrate how culturally tailored, peer-supported models can enhance inclusivity and participation. In the UK context, although formal data are limited, observations from rheumatology POs suggest that <10% of peer-trained individuals are from diverse backgrounds, highlighting a persistent gap in representation. Addressing this inequity requires stronger collaboration between POs, local authorities, public health systems and community partners to embed these organizations within local ecosystems, build trust, and expand access to volunteering and peer training opportunities. Realizing this potential, however, will depend on sustained structural alignment and investment from healthcare systems, in line with the NHS 10 year Long Term Plan’s focus on prevention, community-based care and reducing health inequalities. Engagement with POs typically begins at the clinical interface [5], where healthcare professionals provide leaflets or signpost patients to services. Passive information sharing, however, does not ensure participation. Hospital Episodes Statistics (2024/25) indicate that only 20% of first-time service users are from ethnic minority backgrounds, however, with higher ‘Did Not Attend’ (DNAs) rates observed compared with White counterparts (Table 1). The higher DNA rates among ethnic minority patients may suggest potential access barriers, higher deprivation, greater work instability, unmet need and delayed disease management, while also reducing clinical efficiency. These patterns highlight missed opportunities for proactive engagement. Healthcare professionals could play a transformative role by embedding self-management support early and actively encouraging participation beyond information receipt, including volunteering for peer training. Structured links between clinical services and POs could provide culturally responsive peer support, improve engagement and help develop a volunteer base that reflects the diversity of service users [7]. Without intentional, system-supported strategies, recruitment risks remaining limited to the most engaged and articulate individuals, excluding those who may benefit most. Data from NHS Hospital Episode Statistics for April 2024 to March 2025; the left-hand columns are data related to the first outpatient rheumatology appointment and the right-hand columns are all rheumatology appointments in that year. appt: appointment; DNA: Did Not Attend; NHS: National Health Service. We call for a coordinated, system-level commitment to embed rheumatology POs as strategic partners in equitable care. This requires formal integration into clinical pathways with routine referral and early self-management signposting; sustainable funding for culturally responsive community outreach and inclusive volunteer peer training development; investment in digital and community-based approaches that reduce rather than widen inequalities; and improved ethnicity data collection to evaluate engagement and outcomes. Without deliberate structural action, disparities will persist. With shared accountability across healthcare systems, policymakers, researchers and POs, rheumatology can build a more inclusive, representative and community-embedded model of support that improves long-term outcomes for all. Hospital Episode Statistics data may be obtained from NHS England via a Data Access Request Service application and are not publicly available. All authors contributed equally to this editorial. No specific funding was received from any bodies in the public, commercial or not-for-profit sectors to carry out the work described in this manuscript. Disclosure statement: The authors have declared no conflicts of interest.
Source: Lara D. Veeken
Institutions: The Royal Wolverhampton NHS Trust, University of Birmingham, University Hospital Southampton NHS Foundation Trust, University of Southampton, King's College London, University of Bristol, University of the West of England, University of Rochester Medicine, University of Rochester, University Hospitals Birmingham NHS Foundation Trust, University of Oxford, Oxford University Hospitals NHS Trust, University of Leicester, LUPUS UK
Language: English
Subfield: Sociology and Political Science
Field: Social Sciences
Domain: Social Sciences
Open Access status: green
OpenAlex ID: W7154891844
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