Public involvement in Australian clinical trials: A systematic review

Author:

Zirnsak Tessa-May1ORCID,Ng Ashley H23,Brasier Catherine1,Gray Richard4

Affiliation:

1. Social Work and Social Policy, La Trobe University, Melbourne, VIC, Australia

2. Department of Dietetics, Human Nutrition and Sport, La Trobe University, Melbourne, VIC, Australia

3. Monash Partners Academic Health Science Centre, Melbourne, VIC, Australia

4. School of Nursing and Midwifery, La Trobe University, Melbourne, VIC, Australia

Abstract

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.

Publisher

SAGE Publications

Reference36 articles.

1. Engaging consumers in health research: a narrative review

2. Involvement of consumers in studies run by the Medical Research Council Clinical Trials Unit: Results of a survey

3. National Institute for Health and Care Research. Become a reviewer, https://www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-help-with-research/become-a-reviewer.htm (2023, accessed 22 March 2023).

4. Medical Research Future Fund Consumer Reference Panel. Principles for consumer involvement in research funded by the medical research future fund. Canberra: Department of Health and Aged Care, Australian Government, 2023.

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