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EVENT DESCRIPTION  
 
Event Type:  Webinar (This is an NIH Science event)
 
Title:  Diverse Patient Values About a 'Library of Medical Information': EHRs and Biospecimens in Research
 
Description:  Linking EHRs with biospecimens to conduct systematic, population-based research provides unprecedented opportunities to improve health care. However, this practice poses significant challenges to traditional ethical and regulatory frameworks for data access, use, sharing, and oversight. Further, little research investigates how patients of diverse racial and ethnic backgrounds assess the risks and benefits of volunteering their EHR data and biospecimens for research.

This panel will discuss an NIH-funded study of patient preferences and attitudes on the collection and use of EHRs and biospecimens in a large community-based healthcare system that is actively planning to create its own biobank. Study questions include: To what extent do patients perceive benefits of data sharing and analysis? What do they believe are acceptable tradeoffs between risks and benefits? What are the most important features of and preferred processes for governance and oversight? This panel will discuss results from 20 focus groups of African American, Chinese, Hispanic, non-Hispanic White, and South Asian patients in a community-based healthcare system. It will also discuss lessons learned from the development of novel multilingual videos as methodological tools.
 
Series Name:  Ethical and Regulatory Issues in Cancer Research (ENRICH) Forum
 
Event URL:  https://cbiit.webex.com/cbiit/onstage/g.php?MTID=e588929127694b9f9fed1efe554fe6bc2
 
Videocast:  Event will not be videocast
 
Special Instructions:  Reservations or registration required for this event
 
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EVENT DATE/TIME  
 
Date/Time: 
Thursday, July 27, 2017   3:00pm - 4:00pm Add To Outlook Calendar     Add To iCal Calendar     Add To Entourage Calendar
 
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EVENT SPEAKER(S)  
 
Name:   Sandra Soo-Jin Lee, Ph.D.
Title:   Senior Research Scholar
Organization:   Center for Biomedical Ethics, Stanford University
 
Name:   Mildred Cho, Ph.D.
Title:   Professor of Pediatrics
Organization:   Center for Biomedical Ethics, Stanford University
 
Name:   Stephanie Alessi Kraft, J.D.
Title:   Senior Fellow and Acting Instructor
Organization:   Seattle Children's Hospital and Research Institute
 

EVENT SPONSOR(S)  
 
Organization(s):  [NIH] National Cancer Institute (NCI)
 

EVENT LOCATION  
 
Location:  Off Campus
Building:  https://cbiit.webex.com/cbiit/onstage/g.php?MTID=
 
Other Information: 
 

EVENT CONTACT(S)  
 
Name:   Charlisse Caga-Anan
E-mail:   charlisse.caga-anan@nih.gov
 
Name:   Carol Weil
E-mail:   carol.weil@nih.gov
 
 
 
 
 
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