A snapshot of consumer engagement in clinical trials in Australia: results of a national survey of clinical trial networks and research organisations

• DOI: 10.1186/s40900-022-00338-w
• Publication Date: 2022-02-05T12:02:29Z
• Authors: Anne McKenzie; Janelle Bowden; John R. Zalcberg; Karena Conroy; Julia Fallon-Ferg...; Shilpanjali Jesud...; James Ansell; Ania Anderst; Nicola Straiton
• Keywords: Clinical Research; Snapshot (computer storage)

Little is known about the extent, perceptions or experiences of consumers involved in clinical trials across Australia. The purpose this National study was to better understand activity and trial networks (CTNs), research co-ordinating centres their consumers, around consumer involvement trials.CTNs who were members Australian Clinical Trials Alliance (ACTA), activities these organisations, invited participate online surveys. Surveys completed between April September 2018.80 respondents surveys full: 25 34 CTNs, 5 from 15 centres, included investigators 13 active trials, 10 trials. There 27 respondents. Consumers 19/25 (76%) CTNs 3/5 (60%) centres. at all stages cycle. Despite this, only 8/30 (27%) organisations provided specific training employees on research, most did not have a policy process relating conducting At organisation level, barriers being unsure how involve effectively systematically, difficulty accessing lack infrastructure resources. limited understanding roles, resources training. Enablers education, funding for both sector consumers. Almost (25/27; 92%) would recommend role other potential stating it valuable experience that led knowledge exchange learning process.Over last few years, has increased Australia, but scope varies different therapeutic areas. Consumer valued by do it, however, there are opportunities further foster strengthen ongoing partnerships, example providing practical advice researchers best engage consumers.Consumer (including trials) considered practice yet standard practice. Before doing we know involvement, within organisations. used ask (ACTA) member including found many conducted input Sometimes uncertain aspects so contribution effective added value. also expressed times they as what expected them, some instances been useful help them more effectively. Support needs be appropriate people populations, ethnic backgrounds cultures, First Nations peoples. All agreed resources, needed support