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

Research Involvement and Engagement

Janelle Bowden¹  Nicola Straiton²  Shilpanjali Jesudason³  Karena Conroy⁴  Anne McKenzie⁵  James Ansell⁶  Julia Fallon-Ferguson⁷  John R. Zalcberg⁸  Ania Anderst⁹ 

[1] AccessCR Pty Ltd, 2072, Gordon, NSW, Australia;Australian Clinical Trials Alliance, 3205, Melbourne, VIC, Australia;University of Sydney, 2006, Sydney, NSW, Australia;Central Northern Adelaide Renal and Transplantation Service, 5000, Adelaide, SA, Australia;Faculty of Health and Medical Science, University of Adelaide, 5000, Adelaide, SA, Australia;Consumer & Community Involvement Program, The George Institute for Global Health, 2042, Newtown, NSW, Australia;Sydney Research, Sydney Local Health District, 2050, Camperdown, NSW, Australia;Consumer Engagement, Telethon Kids Institute, Perth Children’s Hospital, 6009, Nedlands, WA, Australia;Consumers Health Forum of Australia, 2600, Deakin, ACT, Australia;School of Population Health, Curtin University, 6845, Perth, WA, Australia;Australian and New Zealand Alliance for Cardiovascular Trials, 6845, Perth, WA, Australia;School of Public Health and Preventive Medicine, Monash University, 3004, Melbourne, VIC, Australia;Department of Medical Oncology, Alfred Health, 3004, Melbourne, VIC, Australia;The George Institute for Global Health, 2042, Newton, NSW, Australia;

关键词: Clinical trials;    Consumer;    Community;    Involvement;    Research;    Australia;    Network;    Patient and public involvement (PPI);   

DOI  :  10.1186/s40900-022-00338-w

来源: Springer

【 摘 要 】

BackgroundLittle 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.MethodsCTNs 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.Results80 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.ConclusionsOver 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.

【 授权许可】

CC BY