Co-design of the aphasia research library: a web-based platform and searchable repository for customisable, accessible research summaries

Background

Researchers have an ethical obligation to make their findings accessible to the communities they serve, and this imperative is increasingly reflected in funding and institutional requirements. Plain language summaries (PLS) are commonly developed alongside traditional outputs to meet this need. Many, however, fail to support diverse communication needs and lack infrastructure for independent discovery and access.

Aims

The original aim was to establish the preferences of people with aphasia regarding the content and format of PLS, and to co-design a communication-accessible PLS template. The participatory process redirected these aims, as described below.

Methods and Procedures

A mixed-methods design was employed using the double diamond co-design framework, with Consumer and Community Involvement embedded across four phases: discover, define, develop, and deliver. In the discover phase, the concept was presented at an online aphasia forum co-hosted by Dyscover and Speakeasy, UK-based aphasia consumer organisations. In the define phase, an international multimodal multilingual survey was used to prioritise research summary content domains. Data were analysed using descriptive statistics and qualitative content analysis. In the develop and deliver phases, a solution: the Aphasia Research Library, was iteratively co-designed in workshops and developed in sprints.

Outcomes and Results

An online forum (discover phase; approximately 30 people with aphasia and family members) established unanimous agreement on the need for accessible research summaries in a single searchable location. An international survey of 70 people with aphasia across 15 countries and 11 languages (define phase) prioritised research aims, results, and implications as essential content domains. Three co-design workshops with four people living with aphasia (develop and deliver phases) identified that a document-based template could not meet needs for personalisation, persistent access, and self-directed discovery, redirecting the project from a template to a platform. The Aphasia Research Library (ARL; www.aphasialibrary.org) is a freely available web-based searchable database. For people with aphasia, the ARL offers a customisable interface with adjustable display settings, text-to-speech conversion, and an integrated plain language dictionary. For researchers, it provides a structured input template with automated readability ratings and a permanent, shareable link.

Conclusions

The ARL addresses both communicative and structural barriers to research access for people with aphasia. The co-design process demonstrates that genuine consumer involvement does not merely refine researcher-led solutions but can fundamentally redefine a problem and its solution. Future directions include integration of artificial intelligence and expansion of multilingual functionality.