Privacy and Security Workgroup:

Big Data Public Hearing

November 10, 2014

Deven McGraw, chairStan Crosley, co-chair

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Agenda

1. Big data topics– Discuss possible topics for big data listening sessions

2. Anticipated Hearing Dates / Format3. Potential Panelists– Create a list of potential panelists

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Main Topic Areas

Health Big Data Opportunities

Learning Health System

Health Big Data Concerns / Harms

Protections for Consumers

Current Law

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Big Data Topics

1. Health Big Data opportunities: some snapshots of what’s happening out there, potentially exploring: – Clinical data combined with consumer-provided data to improve

individual and population health; – Genomic data– Innovative uses of device data; – PCORI initiatives; – Transparency, performance measurement– Mobile app/social networking site data, etc. – Use of non health data for health purposes (e.g., inferences)

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Big Data Topics

AnalyticsLots of information in

anonymized state

Precision MedicineMust identify particular patient;

longitudinal health record

What can be done without identifying an individual patient v. what can be done when the patient is identified?

2. Learning Health System: 2 Buckets

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Big Data Topics

3. Health Big Data Concerns/Harms: discuss the potential harms with use of health big data, ideally based on some real examples (civil rights / discrimination; economic; reputational)

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Big Data Topics

4. Protections for consumers: – Anonymization/de-identification techniques and

their limitations– Explicit prohibition on re-identification?– individual choice/consent and its limitations– Appropriate use limitations

5. Current law: what does it cover and where are the gaps?

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Anticipated Hearing Dates / Format

• Anticipated hearing dates:• December 5 and 8

• Big data hearing topics:• Amend topics?• Additional topics?

• Format:• One panel per topic?• Number of panelists?

• 5-10 minute presentation followed by discussion?

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Potential Panelists

1. Health Big Data Opportunities

2. Learning Health System

3. Health Big Data Concerns / Harms

4. Protections for Consumers

5. Current Law