Abstract
BackgroundThe 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.MethodsConsumers, 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.ResultsACTO'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.ConclusionsThe 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.
Highlights
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
It was established that only one-third of cancer trials conducted in Australia are registered with the Australian New Zealand Clinical Trials Registry (ANZCTR) and approximately two-thirds are registered with the US trial registry, ClinicalTrials.gov (CT.gov)
For ACTO to satisfy consumer demands for a single portal of cancer clinical trials recruiting in Australia, data needed to be sourced from both of these registries
Summary
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. Consumers, led by Cancer Voices NSW (CVN), have campaigned for many years for a national consumer-friendly website about cancer clinical trials which would enable consumers to undertake a comprehensive search for cancer trials recruiting anywhere in Australia and to be able to access information about relevant clinical trials. The need for accessible, understandable and authoritative information about treatment options, including clinical trials, for consumers has been acknowledged by Australian Senate. Low cancer patient participation in clinical trials may reflect lack of knowledge on the part of both doctors and patients about relevant trials that are recruiting [4,5]. Consumer advocates have been keenly aware of the need to increase clinical participation, seeing consumer-friendly information as key to achieving this goal
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