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RareQoL Founder Dr Sondra Butterworth, a Community Health Psychologist, developed EDIRA: Equality Diversity and Inclusive Research Association project. The EDIRA Project is Co-Chaired by Associate Professor Dr Andrew Mitchell at the University of Chester, who provided ethical approval for the EDIRA pilot study and conference. The project has provided important learning from the research, community engagement activities and consultation conference. The EDIRA project has included advocates from diverse and rare disease communities throughout all stages.
Definition: Psychosocial factors refer to mental, emotional, and social elements that influence a person’s engagement with research, including their beliefs, attitudes, and perceptions. Issues related to trust are included in this factor.
Definition: Access barriers relate to difficulties in reaching and engaging with specific patient communities, particularly those that are marginalised or geographically distant.
Definition: Language barriers can involve challenges in understanding due to written language in the form of complex medical information or lack of translation services for patients or care-givers.
Definition: Cognitive ability barriers relate to limitations in understanding complex research concepts, which might exclude patients with cognitive impairments or limited cognitive capacity. This can be due to learning disability, neurodiversity, or mental illness.
Definition: Economic barriers stem from financial constraints that hinder patient participation due to costs associated with travel, accommodation, and medical expenses.
Definition: Funding barriers refer to the lack of financial support for research that focuses on underrepresented patient populations, limiting opportunities for inclusion. Researchers often do not budget for the inclusion of patient or their care-givers.
Definition: Disability barriers include physical, sensory, or cognitive disabilities that may impede patient participation in research activities.
Definition: Cultural competence barriers arise when research protocols do not adequately address diverse cultural values, practices, and beliefs, leading to exclusion.
Definition: Intersectionality barriers recognize that individuals belong to multiple marginalised communities or groups, and their unique experiences may compound exclusion from research.
The EDIRA project’s focus on these barriers is crucial for creating more inclusive research environments that engage patients and care-givers from diverse and rare disease communities. Through addressing these barriers, research can become more representative and impactful.
Dr Sondra Butterworth