Co-producing patient-reported experience measures with people with intellectual disability to improve healthcare quality and outcomes: the 'Listen to Me' project protocol

Introduction: Intellectual disability, defined by significant limitations in both intellectual functioning and adaptive behaviour with onset during the developmental period, affects an estimated 2% (108 million) of people worldwide. People with intellectual disability experience major health inequity, poor health outcomes and premature deaths, with mortality rates that are 7-12 times higher than the general population. Patient-reported experience measures (PREMs) are used worldwide to target improvements in healthcare delivery. Yet, systematic review evidence confirms that people with intellectual disability are excluded from PREMs due to a lack of suitable measurement instruments and supports. To improve healthcare quality and outcomes, people with intellectual disability and their supporters, and academic and clinician researchers will together Coproduce PREMs for, and with, this population apply the PREM in hospitals and use the data to inform local quality improvement projects.

Methods and Analysis: Our 3-year project employs a multi-method design using coproduction, underpinned by an implementation science framework. We will coproduce PREMs that will be applied to improve healthcare quality and outcomes for people with intellectual disability whilst engaging in co-research with people with lived experience of having an intellectual disability and their carers, clinicians and academic researchers. Study 1 will coproduce PREMs for use by people with intellectual disability to report their experiences of inpatient hospital care. Study 2 will use the co-produced PREMs to capture the experiences of people with intellectual disability as inpatients in Australian hospitals; determine PREMs reliability and validity; and costs associated with use. Study 3 will develop the required capability to translate our PREMs into hospitals across Australia. Study 4 will apply PREMs data via continuous quality improvement in partnering hospitals to reduce preventable healthcare associated harm, hospitalisation, and prolonged length of stay experienced by people with intellectual disability. Study 5 will provide a process evaluation of our co-research approach. Quantitative and qualitative analysis will be undertaken, and results will be examined against the project aims.

Ethics and Dissemination: Ethical approval has been obtained (520241735259588; X24-0366; 115771). This study is being conducted with partner health agencies and services nationally in Australia to support achievement of the research aims and translation of findings into practice. Targeted outputs with research dissemination will be guided by, and in collaboration with, the project Consumer Leadership Group, consumer and health system stakeholders, with governance from the Project Steering Group.

Patient or Public Contribution: The Listen to Me project has been designed and planned to ensure the involvement of people with a broad range of abilities, including those with profound intellectual disability who will be able to contribute along with their support person/s. The governance structure of Listen to Me is innovative and inclusive, with consumers providing leadership across all elements of the project. This is co-research conceptualised and conducted with a Consumer Leadership Group (CLG) comprising eight people with lived experiences of intellectual disability; two of whom have an intellectual disability and six of whom are parents or siblings who support family members with intellectual disability. The CLG were involved in the design of the research proposal, reviewing and contributing to the ethics protocols, and the writing of this protocol as authors. The CLG will direct and contribute to all aspects of the research as part of the research team. An easy read summary of this protocol is provided in Supplementary file 1.