Sydney Medical School, Room 391, Blackburn Building, D06, The University of Sydney NSW 2006, Australia.
Health Res Policy Syst. 2011 Jun 26;9:30. doi: 10.1186/1478-4505-9-30.
The Australian Cancer Trials website (ACTO) was publicly launched in 2010 to help people search for cancer clinical trials recruiting in Australia, provide information about clinical trials and assist with doctor-patient communication about trials. We describe consumer involvement in the design and development of ACTO and report our preliminary patient evaluation of the website.
Consumers, led by Cancer Voices NSW, provided the impetus to develop the website. Consumer representative groups were consulted by the research team during the design and development of ACTO which combines a search engine, trial details, general information about trial participation and question prompt lists. Website use was analysed. A patient evaluation questionnaire was completed at one hospital, one week after exposure to the website.
ACTO's main features and content reflect consumer input. In February 2011, it covered 1, 042 cancer trials. Since ACTO's public launch in November 2010, until the end of February 2011, the website has had 2, 549 new visits and generated 17, 833 page views. In a sub-study of 47 patient users, 89% found the website helpful for learning about clinical trials and all respondents thought patients should have access to ACTO.
The development of ACTO is an example of consumers working with doctors, researchers and policy makers to improve the information available to people whose lives are affected by cancer and to help them participate in their treatment decisions, including consideration of clinical trial enrolment. Consumer input has ensured that the website is informative, targets consumer priorities and is user-friendly. ACTO serves as a model for other health conditions.
澳大利亚癌症试验网站（ACTO）于 2010 年公开推出，旨在帮助人们搜索在澳大利亚招募的癌症临床试验，提供有关临床试验的信息，并协助医患沟通有关试验的问题。我们描述了消费者在 ACTO 的设计和开发中的参与情况，并报告了我们对该网站的初步患者评估。
消费者在新南威尔士州癌症之声的带领下为开发该网站提供了动力。研究团队在设计和开发 ACTO 期间咨询了消费者代表团体，该网站结合了搜索引擎、试验详细信息、有关试验参与的一般信息和问题提示列表。分析了网站的使用情况。在暴露于该网站一周后，在一家医院完成了患者评估问卷。
ACTO 的主要功能和内容反映了消费者的投入。2011 年 2 月，它涵盖了 1042 项癌症试验。自 2010 年 11 月 ACTO 公开推出以来，截至 2011 年 2 月底，该网站已收到 2549 次新访问，产生了 17833 次页面浏览量。在对 47 名患者用户的子研究中，89%的患者认为该网站有助于了解临床试验，所有受访者都认为患者应该能够访问 ACTO。
ACTO 的开发是消费者与医生、研究人员和政策制定者合作的一个例子，旨在改善对癌症患者及其生活产生影响的人的信息获取，并帮助他们参与他们的治疗决策，包括考虑临床试验的参与。消费者的投入确保了网站信息丰富、针对消费者的重点并易于使用。ACTO 为其他健康状况提供了模型。
