Participant-Centered Consent Toolkit Overview
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This document discusses the development of a participant-centered consent toolkit by Sage Bionetworks. The toolkit aims to create a user-friendly interface for informed consent documents using visual design tools, templates, and documentation. It includes icons, animations and examples to depict key concepts in clinical studies in an easy-to-understand way. The goal is to deploy consent as a process on mobile and web to better assist participants' understanding of often complex medical studies and research.
Participant-Centered Consent Toolkit Overview
- 1. 1. origins of participant-centered consent at Sage Bionetworks
- 2. first attempt at interaction design for consent
- 4. interaction design prioritizes the user and the experience
- 5. courtesy of: David Fore
- 6. written by a doctor reviewed by a lawyer edited by a committee
- 7. written by a doctor reviewed by a lawyer edited by a committee
- 8. written by a doctor reviewed by a lawyer edited by a committee
- 9. using ongoing Sage Bionetworks studies, develop a participant-centric process…and then make it a general toolkit.
- 10. 2. the PCC “toolkit” (release date next mid-December)
- 11. what can i do with the patient-centered consent toolkit? - create a “user interface” for informed consent documents that assists informedness
- 12. why should i create a user interface for consent? - assist informedness for complex documents - deploy consent as a process via mobile, web
- 13. what’s in the toolkit? - visual design tools you can use to represent clinical study actions - reference documents and templates you can use to bootstrap a consent user interface - methods documentation to help you get started
- 14. “nouns and verbs” - icons for key concepts in clinical study - all open source or public domain from Sage Bionetworks IRB approved studies
- 15. “nouns and verbs” from the digital commons - icons for key concepts in clinical study - all open source or public domain
- 17. “sentences” via animation “separating your identity from your data”
- 18. “sentences” via animation “recombining and reusing your data”
- 21. Parkinsons Disease Mobile Study implementation
- 44. 3. supporting methods and materials
- 45. clinical reference documents “as filed” and as templates
- 46. “as filed” - available for copying and distribution (especially for use as precedent) templates - available as open source documents for reuse and derivatives (for creating new clinical submissions to an IRB)
- 47. as filed: informed consent
- 53. web assets
- 54. coming in 2015
- 55. more nouns, verbs, sentences, stories - genomics - medical records - clinical labs
- 56. cloud technical architecture for 3rd party app-based studies