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Privacy and Security Workgroup: Big Data Public Hearing November 24, 2014 Deven McGraw, chair Stan Crosley, co-chair.

Published byBathsheba Heath Modified over 8 years ago

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Presentation on theme: "Privacy and Security Workgroup: Big Data Public Hearing November 24, 2014 Deven McGraw, chair Stan Crosley, co-chair."— Presentation transcript:

1 Privacy and Security Workgroup: Big Data Public Hearing November 24, 2014 Deven McGraw, chair Stan Crosley, co-chair

2 Agenda 1.Update on Panelists – Report the number of invites sent out and their status – Review panelist questions 2.Panel Structure 3.Big Data Question Topics – Discussion of question topics to cover during hearing 2

3 3 Update on Panelists Day 1 – December 5 Health Big Data Opportunities: Steve Downs (pending) Halle Tecco (pending) Kathy Ko chin (pending) Learning Health System: Rich Platt (confirmed) Patty Brenan (confirmed) Joe Selby (pending) Health Big Data Concerns: Michele DeMooy (confirmed) Marc Boutin (pending) Mark Savage (pending) Protections for Consumers: Khaled El Emam (confirmed) Fred Cate (pending) Bob Gellman (pending) Day 2 – December 8 Current Law: Melissa Bianchi (confirmed) Kirk J. Nahra (confirmed) Deven McGraw (confirmed) Health Big Data Opportunities: Linda Avey (confirmed) John Grant (pending) Payal Shah (pending) Learning Health System: Paul Wallace (confirmed) Patty Brenan (pending) Niall Brennan (pending) Health Big Data Concerns: Leslie Francis (confirmed)

4 4 Panel Structure TimePanels – Day 1 50 minHealth Big Data Opportunities 50 minLearning Health System 5 minBreak 50 minHealth Big Data Concerns 55 minProtections for Consumers TimePanels – Day 2 65 minCurrent Law 50 minHealth Big Data Opportunities 5 minBreak 50 minLearning Health System 50 minHealth Big Data Concerns

5 5 Big Data Question Topics 1.Advantages / limits to current law Challenges researchers face when they try to aggregate and analyze diverse types of data Keeping policy ahead of or at least at pace with technology changes 2.Opportunities Common use cases, data flows, types of data needed and purposes of big data analyses to improve healthcare Privacy-enhancing technologies 3.Learning Health System Ethical obligations – when is patient identity required or not required 4.Concerns Impact on FIPPs (transparency, purpose specification, use limitation, access and redress, etc.) Impact on trust Specific harms (discrimination, civil rights, reputation, etc.) 5.Consumer Protections Role of de-identification Role of consent (opt-in/opt-out)

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