ObjectiveConsumer and community engagement (CCE) in research is increasingly valued in a contemporary healthcare environment that seeks to genuinely partner with consumers and the wider community. Although there is widespread agreement at research governance levels as to the benefits of CCE in research, there is little available research-based guidance as to how best to proceed with CCE organisationally and how to manage and overcome barriers. The aim of this narrative review was to draw together the available research, review findings and relevant governance-related material and to discuss these in light of a case series among research-engaged consumers in order to chart a practical way forward. MethodsA narrative literature review about CCE in research was conducted. Following this, a case series among seven consumers who had been engaged as partners in health research was conducted. Finally, the lived experience of these consumers was explored against the findings of the narrative review. ResultsIn all, 121 papers were identified and reviewed, 37 of which were used to inform the content of this paper. The most important benefits of CCE to both consumers and healthcare researchers were related to improvements in trust between consumer and researchers, and the increased relevance and ethics of research agendas ultimately pursued. Barriers to CCE were found to be pragmatic, attitudinal and organisational. Enabling factors that capitalise on the benefits and help address the barriers to meaningful CCE are outlined and discussed in light of a case series conducted among research-engaged consumers in Australia and internationally. ConclusionBest practice standards, organisational commitments and resources are needed to improve the status quo in Australia and to provide health research end-users with research outcomes that better align with their priorities and needs. What is known about the topic?Consumer and community engagement (CCE) in research is increasing in prevalence and is likely to be beneficial to both consumers and healthcare providers and researchers. What does this paper add?Following review of the available research findings and governance statements about CCE, enabling strategies are presented in light of a case series among Sydney-based research-engaged consumers. What are the implications for practitioners?Barriers to consumer and community engagement can be overcome if well understood and tackled organisationally. The potential benefits of shifting to a fully consumer- or community-engaged healthcare research environment are multifactorial and represent a paradigm shift in favour of evidence-based patient and family-centred care.

Background Little is known about the extent, perceptions or experiences of consumers involved in clinical trials across Australia. The purpose of this National study was to better understand the activity and perceptions of clinical trial networks (CTNs), research co-ordinating centres and their consumers, around consumer involvement in clinical trials. Methods CTNs and research co-ordinating centres who were members of the Australian Clinical Trials Alliance (ACTA), and consumers involved in the activities of these organisations, were invited to participate in online surveys. Surveys were completed between April and September 2018. Results 80 respondents completed the surveys in full: 25 of 34 CTNs, 5 from 15 research co-ordinating centres, and included research investigators of 13 active trials, 10 completed trials. There were 27 consumer respondents. Consumers were involved in clinical trial activities across 19/25 (76%) of CTNs and 3/5 (60%) of research co-ordinating centres. Consumers were involved at all stages of the trial cycle. Despite this, only 8/30 (27%) of research organisations provided specific training to their employees or members on consumer involvement in research, and most did not have a specific policy or process relating to conducting consumer involvement in clinical trials. At the organisation level, barriers to consumer involvement in clinical trials included being unsure how to involve consumers effectively and systematically, difficulty in accessing consumers or lack of infrastructure and resources. At the consumer level, barriers included limited understanding of their roles, a lack of resources and training. Enablers included education, training and funding for both the research sector and for consumers. Almost all consumer respondents (25/27; 92%) would recommend the consumer role to other potential consumers, stating it was a valuable experience that led to knowledge exchange and learning about the research process. Conclusions Over the last few years, consumer involvement in clinical trials has increased in Australia, but the scope of involvement varies across different research organisations, and therapeutic areas. Consumer involvement in clinical trials is valued by most that do it, however, there are opportunities to further foster and strengthen ongoing partnerships, for example by providing practical advice for researchers on how to best engage and involve consumers.

ObjectivesHousing is a social determinant of health that impacts the health and well-being of children and families. Screening and referral to address social determinants of health in clinical and social service settings has been proposed to support families with housing problems. This study aims to identify housing screening questions asked of families in healthcare and social services, determine validated screening tools and extract information about recommendations for action after screening for housing issues.MethodsThe electronic databases MEDLINE, PsycINFO, EMBASE, Ovid Emcare, Scopus and CINAHL were searched from 2009 to 2021. Inclusion criteria were peer-reviewed literature that included questions about housing being asked of children or young people aged 0–18 years and their families accessing any healthcare or social service. We extracted data on the housing questions asked, source of housing questions, validity and descriptions of actions to address housing issues.ResultsForty-nine peer-reviewed papers met the inclusion criteria. The housing questions in social screening tools vary widely. There are no standard housing-related questions that clinical and social service providers ask families. Fourteen screening tools were validated. An action was embedded as part of social screening activities in 27 of 42 studies. Actions for identified housing problems included provision of a community-based or clinic-based resource guide, and social prescribing included referral to a social worker, care coordinator or care navigation service, community health worker, social service agency, referral to a housing and child welfare demonstration project or provided intensive case management and wraparound services.ConclusionThis review provides a catalogue of housing questions that can be asked of families in the clinical and/or social service setting, and potential subsequent actions.

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