Co-producing a patient reported experience measure (PREM) with and for people with intellectual disability

Background: Patient reported experience measures (PREMs) are widely used as key indicators of value in healthcare towards improved services but are rarely applied among people with intellectual disability. Incorporating the experiences of people with intellectual disability in PREMs data is vital as this group often encounter poor healthcare access and outcomes. This study reports the coproduction of accessible PREMs for people with intellectual disability from a 3-year inclusive research project called Listen to Me.

Objective: To coproduce a PREM suitable for people with intellectual disability.

Method: Co-production occurred through inclusive data collection methods in five hybrid co-production workshops within an inclusive research project structure. Preliminary user testing of the Listen to Me PREM was conducted via semi-structured interviews using the 'think aloud' method.

Results: Co-production included two people with intellectual disability, six people who support family members with intellectual disability, three researchers and three people with experience health service management or direct care. Preliminary user testing was completed by 11 people with intellectual disability with a range of communication needs and preferences. The resulting 9-item Listen to Me PREMs are digitally-enabled tools that include accessible features, such as large font and audible options to enable completion directly by people with a range of communication approaches.

Conclusion: The Listen to Me PREMs provide an innovative tool to capture patent-reported experiences directly from people with intellectual disability. By applying tools such as the Listen to Me PREMs, health services are better equipped to identify opportunities for improvement, to enhance access, quality and outcomes in health care delivery for consumers with high healthcare needs.

Patient or Public Contribution: People with diverse abilities and communication preferences have been engaged both as members of the Listen to Me research team, and in all elements of data collection. The Listen to Me project has grown from a collaboration with consumers and all elements of this research engage with a diverse consumer group. The CanEngage Consumer Leadership Group (CLG) is central to all research activities including governance, data collection, analysis, preparation and dissemination of findings. The CLG has eight members, two members have intellectual disability and six are parents or siblings who support family members with intellectual disability to access health care. The CLG were involved in the design of the research proposal, reviewing and contributing to the ethics protocols, the coproduction of the Patient reported experience measure (PREM) and as authors of this paper. People who support family members with intellectual disability to access healthcare were involved in constructing and editing the paper. Two people with intellectual disability were involved in reviewing the accessible summary of the paper and provided feedback on clarity. Some authors are family members of people living with an intellectual disability. These family members are crucial advocates for people with a severe intellectual disability who do not have the capacity or capability of communicating using speech or writing.