Enhancing equality, equity, diversity and inclusion in rare disease research in the United Kingdom

Abstract

Background: Inclusion of under-represented rare-disease communities in research remains limited, threatening representativeness and equity. Methods: To assess equality, equity, diversity, and inclusion in research and identify barriers to participation faced by the rare disease community, utilising a mixed-methods online survey of a convenience sample of community advocates using Likert scales and free response options. Results: The findings from seventeen stakeholders in the rare disease community showed unanimous agreement that anxiety, fear, safety concerns, and lack of trust hinder participation in research. A total of 82% agreed or strongly agreed that additional financial resources are needed, and 76% agreed or strongly agreed that research grant applications often lack sufficient funds. The free-text responses demonstrate that the rare disease communities are keen to be involved in research but faces barriers to inclusion. Rare disease communities are willing to participate in research, but those responsible for research need to address the challenges related to language, misconceptions and fear. Conclusions: Key legislation in the United Kingdom, specifically the Proposed Patient and Public Involvement Strategy 2020–2025, emphasises the importance of involving patients and the public in health and social care. This survey marks the first step toward gaining valuable insights into the challenges faced by this community in participating in healthcare research, which is crucial for developing a solid evidence base for their treatment and care. Involving stakeholders is essential in health and social care policy and practice, rooted in advocacy and social justice.