Learning from co-production methods to improve participation of people with learning disability from ethnic minority populations in healthcare research

Problem

People with a learning disability experience significant inequalities in terms of access to healthcare, experiences of care, and health outcomes. The authors share their reflections on co-production methods, as part of a wider mixed-methods project commissioned by the Race Equality Foundation, aimed at understanding barriers to healthcare for people with a learning disability from an ethnic minority background. Given the underrepresentation of this population in previous research, co-production methods were fundamental for enabling participation and building collaboration with a diverse range of stakeholders.

Approach

A Working Group (WG) was formed during project development, consisting of 10 people with lived experience, either as a self-advocate, family member or supporter. The meetings were co-chaired by a member of the WG. Members for this group were identified through their connections with the Race Equality Foundation (REF) and/or Learning Disability England (LDE). Both REF and LDE provided the support necessary for the WG meetings (e.g., provision of training and information in an accessible format). The WG met monthly over a 9-month period, shaping the design and implementation of different aspects of the project. This informed the focus and methods of a systematic review, policy review, and the delivery of a series of experience-based co-design (EBCD) workshops.

Findings

The co-production methods adopted throughout this project ensured that our methods and findings were centred around people with a learning disability from an ethnic minority background. The WG highlighted several gaps in the existing literature from our systematic review, which were explored further as themes in the EBCD workshops (e.g., digital access, impact of COVID-19). Comprehensive consideration was given to ensure that the workshop sessions were inclusive and welcoming for a wide range of people. The WG also discussed the challenges raised by the ethics committee, giving the research team feedback from their lived experience on recruitment approaches, workshop organisation, methods for consent and the way this project described the inequalities and early deaths of people with a learning disability from ethnic minority populations. Practical tips on navigating ethics committees will be provided.

Consequences

The authors share five main learning points from the co-production elements of the project, which are widely applicable to research projects involving underserved groups. 1) the value of establishing and involving a WG of people with lived experience throughout all stages (including the early stages) of the project; 2) partnership with third sector/charity organisations to support participation of people with special communication needs and addressing potential barriers for involvement; 3) embracing flexibility in research methods (e.g., options for consent; different workshop formats); 4) clearly recording and addressing WG contributions during each stage of the project; 5) importance of building on shared learning to shape continuing project development, such as the refinement of workshop materials.