Patient-Centered Consent

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Post on 01-Nov-2014

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Briefing on the Patient-Centered Consent (a Sage Bionetworks project in conjunction with the Electronic Data Methods Forum).

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<ul><li> 1. http://sagebase.org </li> <li> 2. 1. ! the odds of successful conversion to wisdom go up as more people can see the data. </li> <li> 3. code sharing a prerequisite. http://synapse.org </li> <li> 4. accuracy of model jumped three orders of magnitude in nine days. </li> <li> 5. 76% accurate. 7 </li> <li> 6. 2. ! the portable legal consent experiment </li> <li> 7. 14 </li> <li> 8. 15 </li> <li> 9. butmost dont have data, and most who have data, dont have computationally useful data. </li> <li> 10. and standards are hard to come by in consent. </li> <li> 11. 3. ! the patient-centered consent toolkit </li> <li> 12. provide open source methods and tools for consent that outperform local methods and tools </li> <li> 13. 1. series of interviews and requirements gathering 2. interaction design process and prototyping 3. software development </li> <li> 14. 1. initial metaphor </li> <li> 15. 22 2. initial design </li> <li> 16. 23 3. post-workshop revision </li> <li> 17. implementation in 2 Sage Bionetworks clinical studies (parkinsons, post-chemo cognition) </li> <li> 18. user interface to consent informed consent document map between form and interface IRB reviews for ethical and scientific propriety reviews for effectiveness in informing mobile clinical use standard, vetted interface study protocol and open source software code for consent write locally appropriate consent forms </li> <li> 19. 26 4. PD mobile study (IRB approved) </li> <li> 20. 27 </li> <li> 21. 28 </li> <li> 22. 29 </li> <li> 23. 30 </li> <li> 24. 31 </li> <li> 25. 32 </li> <li> 26. 33 </li> <li> 27. 34 </li> <li> 28. 35 </li> <li> 29. 36 </li> <li> 30. 37 </li> <li> 31. 38 </li> <li> 32. 39 </li> <li> 33. 40 Sage Bionetworks Patient Centered Consent toolkit Beta release 10/2014 with EDM Forum design files individual elements screen compositions sample workflows derived from PD and BCS apps boilerplate consent forms legal text mapped and annotated to design files software code for loop for PD app as approved implementation guidance FAQ protocol design tips </li> <li> 34. Release Strategy ! article in E-GEMS methods journal website with open source tools (attribution licenses) pre-committed beta testers (U. Washington, Cincinnati Childrens Hospital) public presentations through autumn (Stanford Ethics of Data, NIMH, CHoP, Broad Institute, Defrag, OpenCon, Partnering for Cures) social media promotion ! liase with PRIM&amp;R and others to smooth review of protocols using toolkit </li> </ul>

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