What is Big Data? And Why it Matters to You! Shannon McWeeney, PhD 13 th January 2016

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1 What is Big Data? And Why it Matters to You! Shannon McWeeney, PhD 13 th January 2016

2 Google Trends: Big Data Interest over time Chart created 13 th January

3 What is Big Data? Interactive Q&A 3

4 The 4 V s 4

5 What does this mean? Why does this matter to me? 5

6 The Fourth Paradigm* First DESCRIPTIVE Second Third Fourth THEORETICAL COMPUTATIONAL EXPLORATION *Jim Gray, Microsoft 6

7 Career Prospects CAREER 7

8 Career Prospects Chart created 13 th January

9 Scientific Considerations Pubmed ("retraction of publication"[publication Type]) OR "retracted publication"[publication Type] 9

10 Quantifying Data Quantified Self and Your Personal Data 10

11 Quantifying Data 11

12 How much data do you generate? Quantifying Personal Self 12

13 Data: Steve Lochner; Graph: New York Times 13

14 Image: IBM Quantifying YOUR Data

15 Personal Information Streams Omics Traditional Quantified Self Internet of Things Genome: SNP mutations Structural variation Epigenetics Personal and Family Health History Self reported data: health, exercise, food, mood journals, etc. Smart Home Microbiome Prescription History Smart Car Transcriptome Mobile App Data Metabolome Lab Tests: History and Current Personal Robotics Proteome Demographic Data Quantified Self Device Data Environmental Sensors Diseasome Environmentome Standardized Questionnaires Biosensor Data Objective Metrics Community Data Image: Melanie Swan 15 Legend: Consumer available 15

16 Data Ecosystem Image: Eric Schadt 16

17 From Individual to Population Key Use Cases 17

18 We are each, in effect, one-person clinical trials Yet the knowledge generated from those trials will die with us because there is no comprehensive database of metastatic breast cancer patients. In the Big Data era, this void is criminal. 18

19 The unfolding calamity in genomics is that a great deal of life-saving information, though already collected, is inaccessible. Antonio Regalado 19

20 Internet of DNA Source: Harvard Business Review 20

21 GA4GH 21

22 Matchmaker Exchange 22

23 Consumer Genetic Testing 23

24 ClinGen 24

25 Image: Heidi Rehm 25

26 Patient Provided Data 26

27 Clinical data not as big, but It may matter even more to you! David Dorr, MD, MS 13 th January 2016

28 Clinical Data across the health ecosystem

29 Value of clinical data

30 Big Data

31 The future? (or the present, just not evenly distributed*) content/uploads/2012/02/big Data Analytics Frame.png; * quote is from William Gibson, author.

32 What do healthcare institutions plan to use analytics for? According to IDC, the top four reported capabilities for which healthcare organizations intend to use analytics are: Clinical Decision Making at the Point of Care Performance measurement Percent Clinical Outcomes Identify pts in need of Care Management health analytics top aco priority

33 What do visionaries and innovators want to use analytics for? Brand new insights from 1. Harnessing clinical free text 2. Combining data to discover new treatments or approaches 3. Mining device data

34 We need TRANSLATION now of big data genomic results into clinical care Estimated cumulative risk of myopathy associated with high dose simvastatin by solute carrier organic anion transporter family member 1B1 (SLCO1B1) rs genotype. The figure is modified from Ref. 71 (2008) Massachusetts Medical Society.

35 Clinical data major issues Point Clinical data has potential to transform research across the translational continuum Clinical data is increasingly available but requires increased ethical protections Clinical data is incomplete, inaccurate, and messy You can be part of the solution by sharing data, recording metadata, and being responsible Example Multiple opportunities to transform knowledge discovery and generate value Increasing EHR adoption + interest > concerns about privacy, confidentiality, use, and security Computing phenotypes is challenging Up to you just do it!

36 Where we need to focus: Human-Data Interaction Agency Legibility Negotiability 36

37 trackingtransience.net 37

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