SESSION III: Special Issues for Special Populations

3/29/2016
Moderator: James O’Leary, Genetic Alliance
Neely Williams, Community Engagement Strategist,Mid-South CDRN
Annesa Flentje, Mental Health Lead, The PRIDE Study
Jennie David, ImproveCareNow PPRN
Meryl Comer, Co-Principal Investigator, AD-PCPRN
Deborah C. Peel, Founder, Patient Privacy Rights

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Concluding Remarks
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736 views | 1 years ago
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RECAP of DAY 1 and Opportunities for Day 2
Sharon Terry, Chair, PCORnet Engagement Committee 661 views | 1 years ago
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Welcoming Remarks
Joe Selby, PCORI Executive Director
Rachael Fleurence, PCORnet Director, PCORI
4,041 views | 1 years ago
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Keynote: What constitutes trustworthiness?
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Ruha Benjamin, Princeton University 975 views | 1 years ago
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SESSION I: CURRENT LANDSCAPE
Moderator: Kemp Battle, Genetic Alliance Council
Jane Kaye, HeLEX - Centre for Health, Law and Emerging Technologies, University of Oxford, UK 752 views | 1 years ago
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SESSION II: ESSENTIAL ELEMENTS of TRUSTWORTHINESS
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Moderator: Jocelyn Samuels, Director,HHS Office for Civil Rights
Respect–Casey Quinlan, Mighty Casey Media
Privacy–Ivette Torres, GRACIAS Te...
724 views | 1 years ago
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SESSION III: Special Issues for Special Populations
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Moderator: James O’Leary, Genetic Alliance
Neely Williams, Community Engagement Strategist,Mid-South CDRN
Annesa Flentje, Mental Health Lead...
796 views | 1 years ago
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SESSION IV: POLICY APPROACHES AND LEGAL FRAMEWORK
Moderator: Kelly Edwards,University of Washington
Jerry Menikoff, Director, HHS Office for Human Research Protections
Camille Nebeker, A...
760 views | 1 years ago
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SESSION VI: Building Trust
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Moderator: Bray Patrick Lake, PCORnet Coordinating Center
Panelists:
Bowen Chung, Co-PI, CPPRN
Felica Jones, Patient Stakeholder, CPPRN...
812 views | 1 years ago
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SESSION VII:Trust in Other Contexts
Moderator: Whitney Bowman-Zatzkin, Flip the Clinic
Luisa Soaterna-Castañeda, Text4baby
Joy Hathaway, Director of Community Outreach, KaBOOM!...
718 views | 1 years ago
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SESSION VIII: TRUSTWORTHINESS WITHIN PCORNET
Moderator: Andrew Nierenberg, Principal Investigator, MOOD Network
Holly Peay, Principal Investigator, DuchenneConnect
Mitchell R. Lunn,Prin...
760 views | 1 years ago
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SESSION IX: RECOMMENDATIONS for PCORnet
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Moderator: Sharon Terry, Principal Investigator, Community Engaged Network for All PPRN and Chair of the Engagement Committee
Respondents
Ra...
842 views | 1 years ago