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

Consumer 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. Sequential 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. Survey 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). Research 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. Consumer and community involvement in research can improve care for patients, the management of healthcare services, and result in services that better meet the needs of individuals. However, how consumers are involved varies considerably across different research projects. This research aimed to provide an understanding of where consumer and community involvement in healthcare research is taking place and to identify the resources and training most needed to do this well. Researchers and consumers who have previously worked together on a research project were involved. They participated in an online survey to describe their experiences and suggest ideas for change. Similar ideas for improvement that had been described were grouped together to find common themes, and an in-person priority-setting workshop was held to agree on the order of importance of these suggestions. Participants in the online survey were 38 researchers and 16 consumers, and 7 researchers and 8 consumers attended the priority-setting workshop. Research data was collected between September 2024 and May 2025. Participants were recruited from two hospitals and six research centres in Queensland, Australia. They described experiences taking place across all stages of research, using different research methods, and in different healthcare fields. Together, we agreed on six top priorities for improving how consumer and community involvement in research is undertaken. Consumer and community involvement is increasing across all stages of research. Top priorities highlighted the importance of developing strategies that help consumers and researchers work effectively together.