Co-Producing a Patient Reported Experience Measure (PREM) With and for People With Intellectual Disability

B Newman; L Wu; L Mimmo; B Catlett; M Van Hoeke; M Tokutake; K Phillips; D Van Hoeke; K Bowen; DD Baumgarter; P Patterson; E Manias; T Szanto; NA Hackl; D Basur; M Li; C Adams; P Olivier; I Strnadová; JN Trollor; R Harrison

Journal article

Co-Producing a Patient Reported Experience Measure (PREM) With and for People With Intellectual Disability

B Newman, L Wu, L Mimmo, B Catlett, M Van Hoeke, M Tokutake, K Phillips, D Van Hoeke, K Bowen, DD Baumgarter, P Patterson, E Manias, T Szanto, NA Hackl, D Basur, M Li, C Adams, P Olivier, I Strnadová, JN Trollor Show all

Health Expectations | Published : 2026

DOI: 10.1111/hex.70562

Open access

Abstract

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-produ..

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