Patient registries to cater for the evolving needs of dynamic eConsent and language translations

Ms Yvette Wyborn¹, Mr Adam Smith¹, Mr Ryan Bennett¹, Megan Tones¹, Mr Chris Williams¹, Prof Nik Zeps¹, Prof. Matt Bellgard¹

¹eResearch Office, Queensland University of Technology, Brisbane, Australia

According 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.

Web-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.

In 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.

Biography:

Yvette 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.

Adam Smith is a Software Developer with a passion for open-source, distributed systems, data analytics, and tinkering with code.