Public involvement in Australian clinical trials: A systematic review.

BACKGROUND: Public involvement enhances the relevance, quality, and impact of research. There is some evidence that public involvement in Australian research lags other countries, such as the United Kingdom. The purpose of the systematic review was to establish the rates and describe the characteristics of public involvement in Australian clinical trials. METHODS: We reviewed evidence of public involvement in all Australian randomised controlled trials published in the first 6 months of 2021. To determine the quality of public involvement, we used the five-item short-form version of the Guidance of Reporting Involvement Patients and the Public, version 2. RESULTS: In total, 325 randomised controlled trials were included, of which 17 (5%) reported any public involvement. Six trials reported public involvement in setting the research aim and seven in developing study methods. The authors of one study reflected on the overall role and influence of public involvement in the research. CONCLUSION: Rate of public involvement in Australian clinical trials is seemingly substantially lower than those reported in countries with similar advanced public health care systems, notably the United Kingdom. Our observations may be explained by a lack of researcher skills in how to involve the public and the failure by major funding agencies in Australia to mandate public involvement when deciding on how to award grant funding.

Creating "an oasis of hope, inclusion and connection": students and stakeholders' experiences of a pilot Recovery College.

BACKGROUND: Recovery Colleges are an innovative approach to promoting personal recovery for people experiencing mental illness. AIMS: This study was to explore experiences of students, supporters, staff, educators and external stakeholders (i.e. partner organisations) of a pilot Recovery College in the Australian Capital Territory (ACTRC), and the impact of participation in the College for students and supporters. METHODS: ACTRC students, supporters, staff and educators, and external stakeholders were invited to participate in a mixed-method evaluation via an online survey, interviews and/or focus groups. The survey included questions regarding experiences and recovery-orientation of the College environment, and for students and supporters only, satisfaction with the College. Qualitative data from interviews and focus groups was inductively coded, thematically analysed and triangulated with survey responses. RESULTS: The findings suggest that the ACTRC provides a safe space, promotes meaningful connections within and beyond the college, and offers steppingstones supporting recovery and growth. Participants spoke positively about cross institutional partnerships and collaboration with several organisations within the ACT. CONCLUSIONS: This evaluation reiterates the role of Recovery Colleges as an innovative approach to promoting personal recovery for people living with mental illness. Adequate resourcing and collaboration are essential in realising the value of co-production whilst ensuring sustainability.

Social inclusion of LGBTQ and gender diverse adults with intellectual disability in disability services: A systematic review of the literature.

BACKGROUND: Lesbian, gay, bisexual, transgender, queer (LGBTQ) and gender diverse adults with intellectual disability experience exclusion within disability services. OBJECTIVE: This review explores the experiences of social inclusion/exclusion of this cohort in the context of disability services. SEARCH METHOD: A systematic search was conducted of peer-reviewed research published between January 2014 and April 2019. Five databases returned 66 articles plus three from hand searches. APPRAISAL AND SYNTHESIS: Nine articles were included in this review. The Critical Appraisal Skills Programme tool was used to assess the quality of the research. NVivo 12 was used as a tool to organise the articles. RESULTS: Marginalisation of LGBTQ adults with intellectual disability in western societies is mirrored in disability organisations. There remains a dearth of research into experiences of transgender people with intellectual disability who use disability services. CONCLUSIONS: Research into interventions that support the inclusion of this cohort in disability support services is needed.

Community-based models of care facilitating the recovery of people living with persistent and complex mental health needs: a systematic review and narrative synthesis.

Objective: This study aims to assess the effectiveness of community-based models of care (MoCs) supporting the recovery of individuals who experience persistent and complex mental health needs. Method: We conducted a systematic review and narrative synthesis of MoC studies reporting clinical, functional, or personal recovery from October 2016 to October 2021. Sources were Medline, EMBASE, PsycInfo, CINAHL, and Cochrane databases. Studies were grouped according to MoC features. The narrative synthesis was led by our researchers with lived experience. Results: Beneficial MoCs ranged from well-established to novel and updated models and those explicitly addressing recovery goals and incorporating peer support: goal-focused; integrated community treatment; intensive case management; partners in recovery care coordination; rehabilitation and recovery-focused; social and community connection-focused; supported accommodation; and vocational support. None of our diverse group of MoCs supporting recovery warranted a rating of best practice. Established MoCs, such as intensive case management, are promising practices regarding clinical and functional recovery, with potential for enhancements to support personal recovery. Emerging practice models that support personal and functional recovery are those where consumer goals and priorities are central. Conclusion: Evidence for established models of care shows that there is a need for inevitable evolution and adaptation. Considering the high importance of effective MoCs for people experiencing persistent and complex mental health needs, further attention to service innovation and research is required. Greater emphasis on the inclusion of lived and living experience in the design, delivery, implementation, and research of MoCs is needed, to enhance MOCs' relevance for achieving individual consumer recovery outcomes.

Reporting of patient and public involvement and engagement (PPIE) in clinical trials published in nursing science journals: a descriptive study.

BACKGROUND: Patient and Public Involvement and Engagement (PPIE) in research positively affects the relevance, quality, and impact of research. Around 11% of studies published in leading medical journals demonstrate PPIE. The extent of PPIE in nursing research has not been previously studied. METHODS: A descriptive study of PPIE in clinical trials published in general nursing science journals between 1st January and 31st August 2021. Data were extracted from included studies against the five items of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) short form reporting checklist. RESULTS: We searched 27 journals and identified 89 randomised controlled clinical trials. There was no statement or evidence of PPIE in any of the included trials. CONCLUSION: Nurse researchers need to ensure that they purposefully involve patients in their research and report this in papers describing study findings.

Patient involvement in research may improve the quality and relevance of the work. The British Medical Journal­one of the top medical research journals in the world­has developed a patient partnership plan. Part of this plan requires papers sent to the journal for publication to include a statement about how patients were involved in the research. If patients were not involved in the research, this should be stated in the paper. Most papers published in the British Medical Journal now include a statement about patient involvement. We wanted to check if nurses were reporting patient involvement in the research they do. We read 89 randomised controlled trials (RCTs) published in 27 general nursing journals. We focused on RCTs because they are widely considered the gold standard for evaluating interventions and therefore are most likely to impact on patient care. Unlike the British Medical Journal, there was no evidence that nursing journals required authors to say how patients were engaged or involved in the research they published. There was no evidence of patient involvement in any of the nursing research articles that we looked at. The implication of our work is that nurse researchers need to be developing ways for effective engagement of patients in all aspects of their research and explaining how they did this in the papers they publish in nursing journals.