Aims: Patient outcome and experience data are increasingly used to inform cancer care and service priorities. However, routinely used patient measures are often unsuitable for people with intellectual disability. Engaging people with intellectual disability in research to inform care is vital to address long recognised disparities in health care access and outcomes. We aimed to develop, implement and evaluate an experience measure suitable for people with intellectual disability using inclusive codesign methods.
Methods: We used inclusive codesign activities, including Delphi survey, to determine priority topics, suitable questions and format of a patient experience measure for people with intellectual disability. We implemented a citizen science approach incorporating inclusive arts-based research methods. The codesign group includes 8 consumers with lived experience, 3 researchers, digital design specialists, and health practitioners and service experts invited for input as needed. We conducted 4 codesign workshop meetings, with flexible engagement between workshops, to develop a digital data collection tool prototype. Themes developed in the workshops were shared using an inclusive Delphi approach to gain broader input.
Results: In this session we will report the inclusive codesign approach and Delphi survey used to develop a digital prototype experience measure for people aged 6 and above, with intellectual disability. We will provide reflections relevant for cancer care service planners and practitioners seeking to engage people with intellectual disability in inclusive codesign and present the resulting tool.
Conclusions: Engaging people with lived experience in development, implementation and evaluation is essential to produce engagement strategies, such as patient reported experience measures, suitable for people with intellectual disability.
When creating data collection tools to inform change, input from all stakeholders throughout the process is important. Including perspectives of consumers, alongside practitioners and policy makers, enriches the quality of data collected to enable meaningful improvement and ensure data usability.