Experiences of current practice, priorities and strategies for enabling meaningful consumer and community involvement collaborations in health and medical research in Queensland, Australia.

backgroundConsumer and community involvement (CCI) in health and medical research is essential for ensuring meaningful and transferrable research. However, CCI practices vary across study types, research fields, and settings, limiting capacity to determine changes needed to enhance partnerships. This study aimed to (1) describe and evaluate current CCI practices; (2) explore experiences; and (3) collaboratively identify priorities and strategies to increase meaningful practice.

methodsSequential mixed-methods design, comprising an online cross-sectional survey and in-person priority-setting workshop. Researchers and consumers with experience of CCI relative to health and medical research were eligible. Snowball sampling was used to recruit from six research institutes (4-health-service centres; 2-university centres) and two research-active public hospitals from one health precinct in Queensland, Australia. Four-part cross-sectional survey included: 1-participant characteristics; 2-research characteristics; 3-experiences and priority generation; 4-ranking training and organisational development needs. The survey used multiple-choice, Likert-scales and open-ended questions. Following this, a facilitated priority-setting workshop was undertaken with a sample of consumer and researcher respondents, to identify priorities and strategies to promote meaningful CCI in research. Qualitative analysis and descriptive statistics were applied to survey data. Triangulation was ensured through confirmation of themes across experience data and prioritisation rankings. Data were collected between September 2024 and May 2025.

resultsSurvey participants: researchers (n = 38) and consumers (n = 16). Priority-setting workshop: researchers (n = 7) and consumers (n = 8). Experiences described CCI across all research cycle stages, and for consumers with varying levels of involvement in decision making in individual studies. For consumers, challenging experiences were often associated with having insufficient input or influence on the research. Challenges for researchers were commonly related to resourcing constraints, limited time for process modifications or communication support, navigating inflexible processes and systems, or finding, approaching and engaging consumers for relevant projects at appropriate times. Six top priorities and strategies for improvement were collaboratively agreed. The top priority called for increased organisational development (e.g., dedicated CCI expertise available for researchers to access).

conclusionsResearch demonstrated increasing application of CCI across research fields. Consumers reported genuine and meaningful involvement but sought clearer role definitions. Implementing identified priorities may result in more adequately resourced CCI in research.