The Frictions and Flows of Data-Intensive Transformations: A Comparative Study of Discourses, Practices, and Structures of Digital Health in the U.S. and India Brittany Fiore-Silfvast A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy University of Washington 2014 Reading Committee: Kirsten Foot, Co-Chair Gina Neff, Co-Chair Philip Howard Program Authorized to Offer Degree: Communication i ©Copyright 2014 Brittany Fiore-Silfvast ii University of Washington Abstract The Frictions and Flows of Data-Intensive Transformations: A Comparative Study of Discourses, Practices, and Structures of Digital Health in the U.S. and India Brittany Fiore-Silfvast Co-Chairs of the Supervisory Committee: Associate Professor, Kirsten Foot Assistant Professor, Gina Neff Department of Communication This dissertation examined the social and organizational implications of data-intensive transformations in healthcare through studying digital health and processes of informationalization in the U.S. and India. These transformations bring challenges of how to mobilize digital health data across different contexts of use and make data valuable for multiple stakeholders. To study these challenges I employed a combination of discourse analysis, ethnographic methods, and a comparative case study analysis to investigate digital health innovation across rural healthcare and urban consumer health and wellness settings in the U.S. and India. Through a communication lens this research examines sociotechnical interoperability for data across domains on three levels: discourses, communicative practices, and organizational structures and labor. Across the discourses and practices of different communities, I found communication gaps around health and wellness data. To explain these gaps I propose the concept of data iii valence to represent the different expectations and social values that mediate the social performance of data. Analysis through a data valence lens generated the following typology: actionability, connection, self-evidence, truthiness, discovery, accountability, and transparency. Mapping the multiple, and sometimes conflicting valences across contexts accounts for the multiple social and material lives of data and highlights tensions across stakeholder groups. I argue that this typology is portable to other fields of data-intensive work. In comparing cases of digital health pilot projects, the differences between reinforcing and redrawing professional boundary relations, and in the role of intermediary labor in translation of digital health data for clinical and administrative sensemaking, patient engagement, and algorithmic calibration, at one time support polyvalent data in the U.S. Telehealth case and hinder it in India mHealth. Further, in the aftermath of the terminated U.S. Telehealth project, aspects of the technology continued to materialize within organizational practices and structures, such that organizational changes became the technological residue of the pilot projects. This suggests digital health’s emphasis on technological innovation overlooks essential organizational and communicative dimensions of informationalizing healthcare and needs to be expanded beyond measures of success and failure to account for how technological innovation extends into and co-evolves with a wider network of organizational practice. iv TABLE OF CONTENTS Chapter 1 Introduction 1 Introduction of the Problem ............................................................................................ 2 Defining Digital Health ............................................................................................... 3 The Problem of Data-Intensive Transformation .......................................................... 5 Description of Study .................................................................................................. 10 Theoretical Framework ................................................................................................. 12 Understanding Data-Intensive Transformation through Communication and Technology Theory ................................................................................................................ 13 Digital Innovation in Organizing ............................................................................... 19 Digital Health Ecologies ............................................................................................ 24 Informationalization of Bodies, Patients, and Populations........................................ 26 Digital Health Discourses and Practices ....................................................................... 33 The Doing of Digital Health Discourses ................................................................... 33 Technology-in-Practice ............................................................................................. 33 Framing the Relationship of Technology and Social Change ................................... 35 Themes Characterizing Technology and Social Change ........................................... 36 Challenges for Data Use and Reuse Across Domains of Digital Health ...................... 43 Co-configuration of Technology and (Re)Use .......................................................... 44 Entangled Social and Material Lives of Data ............................................................ 46 Organizational Restructuring and Intermediary Labors ................................................ 48 An Occasion for Organizational Restructuring ......................................................... 50 Labors of technology-in-practice ............................................................................... 52 Research Design ............................................................................................................ 57 Discourses of the Field/in the Field ........................................................................... 60 Practices and Communities of Digital Health ........................................................... 62 Organizational Structures and Labor in Context: A Comparative Case Study Analysis ................................................................................................................................. 66 Digital Health Pilot Projects .......................................................................................... 69 U.S. Telehealth .......................................................................................................... 69 India mHealth ............................................................................................................ 73 Chapter Overview ......................................................................................................... 75 Chapter 2 Discursive Contexts for Healthcare and Technology 77 U.S. Rural Healthcare and Technology ......................................................................... 80 The State of U.S. Healthcare ..................................................................................... 80 v Healthcare System Optimization ............................................................................... 84 Data Liberation, Data Regulation .............................................................................. 86 Partnerships and Cross-Sector Collaboration ............................................................ 90 U.S. Consumer Health and Wellness and Technology ................................................. 91 Consumerization of Health and Wellness ................................................................. 91 The Entrepreneurial Engine of Digital Health ........................................................... 93 Big Data and the Macroscope .................................................................................... 95 Data-based Partnerships ............................................................................................ 96 India Rural Healthcare and Technology........................................................................ 98 State of Indian Rural Health and Healthcare ............................................................. 98 ICTD in India........................................................................................................... 102 Big Data and Development...................................................................................... 106 Multi-stakeholder Partnerships ................................................................................ 109 India Consumer Health and Wellness and Technology .............................................. 111 Affordable Health Care and the Fortune at the Bottom of the Pyramid .................. 112 MedTech Innovation the Indian Way ...................................................................... 113 Data Governance ..................................................................................................... 115 Public Private Partnerships ...................................................................................... 116 Chapter 3 Discourses of Technology and Social Change in the Field of Digital Health 118 Institutional Change .................................................................................................... 119 Filling Institutional Gaps ......................................................................................... 120 Strengthening Institutions .......................................................................................