Designing an accessible and equitable conference and the evaluation of the barriers to research inclusion for rare disease communities

Abstract

Introduction: The United Kingdom Rare Diseases Framework, published in 2021, addresses the lack of diversity in rare disease research, particularly in clinical trials, due to intersecting issues related to rare disease symptoms and health inequalities. The framework outlines the government's commitment to improving the lives of the 3.5 million people living with rare conditions in the United Kingdom. Objective: The primary objective is to advance equality, diversity, and inclusion in research by developing innovative methods to engage with communities, establish trust, and enhance the participation and voices of underrepresented and underserved communities. Methods: The conference was held in May 2023, bringing together voices with lived experiences from rare and diverse communities to meet and discuss with established researchers, policy influencers and advocates. The evaluation design was developed using the Program Logic Model and utilised a conference evaluation form on barriers to inclusion. Results: The Rare Disease Community identifies disability as the primary obstacle to inclusion. Social Care and Public Health Communities and Clinical Research Communities identified a need for more cultural competency. The Diverse Community selected psychosocial issues, and the Academic Community identified funding as the most significant barrier. Conclusions: The Community of Practice workshops showed the variety of lived experiences and potential barriers people confront for inclusion in research. Listening to individual viewpoints was crucial to creating or repairing community trust. The Academic Community felt that research funders and ethics review boards must adapt their institutional practices to include financial resources for outreach and participation in research design.