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Consumer input into research: the Australian Cancer Trials website
Rachel F Dear1, Alexandra L Barratt, Sally Crossing
1Sydney Medical School, Room 391, Blackburn Building, D06, The University of Sydney NSW 2006, Australia. rachel.dear@sydney.edu.au.
Health Research Policy and Systems
|June 28, 2011
Summary
The Australian Cancer Trials website (ACTO) was co-designed with consumers to improve access to cancer clinical trial information. Patient evaluations show ACTO is helpful and should be widely available.
Area of Science:
- Health Informatics
- Consumer Health Informatics
- Clinical Trial Management
Background:
- The Australian Cancer Trials website (ACTO) was launched in 2010 to facilitate cancer clinical trial searches in Australia.
- ACTO aims to provide comprehensive information on clinical trials and support doctor-patient communication regarding trial participation.
Purpose of the Study:
- To describe consumer involvement in the design and development of the ACTO website.
- To report preliminary patient evaluation findings for the ACTO website.
Main Methods:
- Consumer groups, led by Cancer Voices NSW, influenced ACTO's design and development.
- ACTO integrates a search engine, trial details, general participation information, and question prompts.
- Website usage analytics and a patient evaluation questionnaire were employed.
Main Results:
- ACTO's features and content are a direct result of consumer input.
- As of February 2011, ACTO listed 1,042 cancer trials.
- From launch to February 2011, ACTO had 2,549 new visits and 17,833 page views.
- A sub-study of 47 patients found 89% considered the website helpful for learning about trials, with all respondents advocating for patient access.
Conclusions:
- ACTO exemplifies successful collaboration between consumers, healthcare professionals, researchers, and policymakers.
- Consumer input has ensured ACTO is informative, user-friendly, and addresses patient priorities.
- ACTO provides a valuable model for improving health information accessibility and patient engagement in treatment decisions for other health conditions.
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