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X-WR-CALDESC:eResearch Australasia Conference
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DTSTART:20211015T034000Z
DTEND:20211015T040000Z
DTSTAMP:20210824T200400Z
CREATED:20210825
LAST-MODIFIED:20210913
PRIORITY:5
TRANSP:OPAQUE
SUMMARY:Patient registries to cater for the evolving needs of dynamic eConsent and language translations
DESCRIPTION:Ms Yvette Wyborn1, Mr Adam Smith1, Mr Ryan Bennett1, Megan Tones1, Mr Chris Williams1, Prof Nik Zeps1, Prof. Matt Bellgard1\n1eResearch Office, Queensland University of Technology, Brisbane, Australia\nAccording to the Asia-Pacific Economic Cooperation, rare diseases affect approximately 6-8% of the global population, which is an estimated 200 million individuals within 21 APEC economies alone.  Not-for-profit, patient-driven registries are key enabling tool for detailed data collection within a diverse, global cohort. A global registry should be open source and cost-optimised deployable, and easy to use. Essential components for successful deployment and uptake include multi -level -user access/controls, allowing patient registration and self-reporting, and link to external systems. Two critical components are dynamic eConsent and language translations.\nWeb-based, mobile friendly Dynamic eConsent is essential to facilitate clinical research and patient empowerment. Functionality must include eSignature capture, ability for registered users to consent and withdraw it should they choose at a latter stage. The content should be easily customisable as well as be delivered in multiple formats including inline text, embedded videos or documents. Translations are critical for global registries in order to encourage participation. Delivering a registry in a patient’s native language promotes more accurate and complete contributions. However, integrating professional translations can be costly and a maintenance burden. Using a crowd-sourced community-driven translation workflow, rare disease communities can both increase patient outreach, and strengthen existing patient buy-in. This makes translation a continuous, sustainable feature of registries rather than intermittent burden.\nIn this presentation, we detail common challenges faced in the development and deployment of dynamic eConsent and community-driven translation services for registries, and walkthrough some innovative solutions our team have delivered to support these critical features.\n\nBiography:\nYvette Wyborn is a technical Business Analyst who has worked across the banking, telecommunication and education industries. She has a keen interest in user experience and accessibility in technology, workshop facilitation, and design thinking.\nAdam Smith is a Software Developer with a passion for open-source, distributed systems, data analytics, and tinkering with code.\n
URL:https://conference.eresearch.edu.au/events/patient-registries-to-cater-for-the-evolving-needs-of-dynamic-econsent-and-language-translations/
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