An Epidemiology of Big Data
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Syracuse University SURFACE Dissertations - ALL SURFACE May 2014 An Epidemiology of Big Data John Mark Young Syracuse University Follow this and additional works at: https://surface.syr.edu/etd Part of the Social and Behavioral Sciences Commons Recommended Citation Young, John Mark, "An Epidemiology of Big Data" (2014). Dissertations - ALL. 105. https://surface.syr.edu/etd/105 This Dissertation is brought to you for free and open access by the SURFACE at SURFACE. It has been accepted for inclusion in Dissertations - ALL by an authorized administrator of SURFACE. For more information, please contact [email protected]. ABSTRACT Federal legislation designed to transform the U.S. healthcare system and the emergence of mobile technology are among the common drivers that have contributed to a data explosion, with industry analysts and stakeholders proclaiming this decade the big data decade in healthcare (Horowitz, 2012). But a precise definition of big data is hazy (Dumbill, 2013). Instead, the healthcare industry mainly relies on metaphors, buzzwords, and slogans that fail to provide information about big data’s content, value, or purposes for existence (Burns, 2011). Bollier and Firestone (2010) even suggests “big data does not really exist in healthcare” (p. 29). While federal policymakers and other healthcare stakeholders struggle with the adoption of Meaningful Use Standards, International Classification of Diseases-10 (ICD-10), and electronic health record interoperability standards, big data in healthcare remains a widely misunderstood phenomenon. Borgman (2012) found by “studying how data are created, handled, and managed in multi- disciplinary collaborations, we can inform science policy and practice” (p. 12). Through the narratives of nine leaders representing three key stakeholder classes in the healthcare ecosystem: government, providers and consumers, this phenomenological research study explored a fundamental question: Within and across the narratives of three key healthcare stakeholder classes, what are the important categories of meaning or current themes about big data in healthcare? This research is significant because it: (1) produces new thematic insights about the meaning of big data in healthcare through narrative inquiry; (2) offers an agile framework of big data that can be deployed across all industries; and, (3) makes a unique contribution to scholarly qualitative literature about the phenomena of big data in healthcare for future research on topics including the diffusion and spread of health information across networks, mixed methods studies about big data, standards development, and health policy. AN EPIDEMIOLOGY OF BIG DATA by John Mark Young B.S., University of Maryland, 2001 E.M.L., Georgetown University, 2007 Dissertation Submitted in Partial Fulfilment of the requirements for the degree of Doctor of Professional Studies in Information Management Syracuse University May 2014 © John Mark Young 2014 All rights reserved ACKNOWLEDGEMENTS First, I want to acknowledge my doctoral committee, Dr. Art Thomas, Dr. Michelle Kaarst-Brown, and Dr. Jian Qin, my advisor who guided me through this journey with an informed and fair disposition. I also want to acknowledge Dr. Andrew London and Dr. Derrick Cogburn for serving in instrumental roles on the dissertation committee. I also want to recognize my classmates in each of the professional doctoral cohorts, particularly those in cohorts three and four for unwavering encouragement and support – these are lifelong friendships. Though they remain anonymous, this dissertation thesis would not have been possible without the nine study participants who were very generous with their time in spite of busy schedules and a federal government shutdown. Their insights and perspectives were inspirational. I would like to acknowledge Rita Charon, M.D. (Columbia University) the foremost authority in Narrative Medicine who encouraged me to think deeply about the distinction between Narrative Medicine verses Healthcare Narratives and Dr. Rebecca Gardner (Upstate Medical Center), who generously provided me with timely scholarly works in medical humanities and who introduced me to other scholars in this important field of medicine. I would like to acknowledge the leadership of the ECRI Institute (Washington, D.C.) and Brent James, M.D. (Intermountain Health) who liberally offered unparalleled insights into big data in healthcare; and, Dr. Paul Cleary (Yale University) whose insight on the importance of healthcare consumer information needs was timely. Finally, I am blessed to have had parents, Odell and Susie Young and my siblings who early in my life planted the seeds of this journey. And to my wife, Erie Sampson: thank you for your extraordinary emotional support and patience while I pursued my educational dream. iv TABLE OF CONTENTS CHAPTER I. INTRODUCTION ................................................................................................ 1 Research Question .......................................................................................................................... 2 Healthcare at a Glance .................................................................................................................... 3 Big Data in a General Context ........................................................................................................ 4 Big Data in Healthcare .................................................................................................................... 8 Healthcare’s Big Data Drivers ........................................................................................................ 9 Consumers of Health and Healthcare ........................................................................................... 13 Data Sharing.................................................................................................................................. 17 CHAPTER II. LITERATURE REVIEW ................................................................................. 23 A Dearth of Scholarly Literature .................................................................................................. 24 Modified Systematic Literature Review Approach ...................................................................... 25 Systematic Review Challenges ..................................................................................................... 27 Grey Literature Approach ............................................................................................................. 27 Article Selection Criteria .............................................................................................................. 29 Preliminary Literature Search ....................................................................................................... 29 Results from the Literature Review .............................................................................................. 30 Analyzing the Evidence ................................................................................................................ 32 Observations from the Literature Review and Emergent Themes ................................................ 33 CHAPTER III. METHODOLOGY .......................................................................................... 41 Study Design ................................................................................................................................. 41 Research Question ........................................................................................................................ 43 Study Influencers and Rationale ................................................................................................... 43 CHAPTER IV. DATA COLLECTION .................................................................................... 46 Sampling Frame ............................................................................................................................ 46 Snowball Sampling as a Supplemental Strategy ........................................................................... 47 Recruitment ................................................................................................................................... 48 CHAPTER V. KEY HEALTHCARE STAKHOLDER ‘STORIES’ ..................................... 49 Study Participant Profiles ............................................................................................................. 49 Study Participant Narratives ......................................................................................................... 51 “A Whole Heap of 1’s and 0’s” ................................................................................................ 53 “Mapping the Knowledge Base of Medicine” .......................................................................... 58 “My Big Data – Your Big Data” .............................................................................................. 67 “Always Create Data for a Purpose” ........................................................................................ 79 v “Big Data Means Greater Truth” .............................................................................................. 88 “The Art of Applying Information and Evidence” ................................................................... 97 “Learn to Talk to the Patient about Data” ............................................................................... 109 “A Sentinel