Consumer input into research: the Australian Cancer Trials website

被引:10
作者
Dear, Rachel F. [1 ]
Barratt, Alexandra L. [2 ]
Crossing, Sally [3 ]
Butow, Phyllis N. [4 ]
Hanson, Susan [5 ]
Tattersall, Martin H. N. [6 ]
机构
[1] Univ Sydney, Sydney Med Sch, Sydney, NSW 2006, Australia
[2] Univ Sydney, Sydney Sch Publ Hlth, Sydney, NSW 2006, Australia
[3] Canc Voices NSW & Breast Canc Act Grp NSW, Sydney, NSW, Australia
[4] Univ Sydney, Sch Psychol, Sydney, NSW 2006, Australia
[5] Canc Australia, Melbourne, Vic, Australia
[6] Univ Sydney, Dept Med, Sydney, NSW 2006, Australia
基金
英国医学研究理事会;
关键词
CLINICAL-TRIALS; PARTICIPATION; INTERNET; INVOLVEMENT; SYSTEM;
D O I
10.1186/1478-4505-9-30
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
100404 [儿少卫生与妇幼保健学];
摘要
Background: 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. Methods: 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. Results: 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. Conclusions: 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.
引用
收藏
页数:11
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