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Data Segmentation in Electronic Health Information Exchange: Policy Considerations and Analysis

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Data Segmentation in Electronic Health Information Exchange: Policy Considerations and Analysis DATA SEGMENTATION IN ELECTRONIC HEALTH INFORMATION EXCHANGE: POLICY CONSIDERATIONS AND ANALYSIS September 29, 2010 Prepared for: Jodi Daniel, JD, MPH, Director, Office of Policy and Planning Steven Posnack, MHS, MS, Division Director, Federal Policy Joy Pritts, JD, Chief Privacy Officer Office of the National Coordinator for Health IT 200 Independence Avenue, SW, Suite 729D Washington, DC 20201 Prepared by: Melissa M. Goldstein, JD Associate Professor Department of Health Policy, School of Public Health and Health Services The George Washington University Medical Center 2021 K Street, N.W., Suite 800 Washington, DC 20006 Alison L. Rein, MS Director AcademyHealth 1150 17th Street NW, Suite 600 Washington, DC 20036 With research assistance from: Melissa M. Heesters, JD Penelope P. Hughes, JD Benjamin Williams Scott A. Weinstein The content of this whitepaper does not necessarily reflect the views or policies of the Office of the National Coordinator or the Department of Health and Human Services. The authors are solely responsible for the content. Table of Contents EXECUTIVE SUMMARY............................................................................................................I INTRODUCTION......................................................................................................................... 1 What is Data Segmentation in the Health Care Context?..................................................... 2 Why Segment Health Care Data? ........................................................................................... 2 What Types of Information do Patients Typically Wish to Segment? ................................. 5 Components of Data Segmentation ......................................................................................... 6 At What Level is the Information Blocked (i.e., capture, access, or view?) ........................... 6 Who Gets to Make the Determination?................................................................................... 6 Who Has Authority / Ability to Apply Segmentation Preferences?......................................... 7 Core Components (i.e., the what, who, why and when).......................................................... 7 The Public Data Segmentation Debate ................................................................................... 8 HEALTH INFORMATION PRIVACY LAWS THAT DRIVE THE NEED TO SEGMENT DATA............................................................................................................................................ 10 Individual Laws....................................................................................................................... 11 HIPAA and the Privacy Rule................................................................................................. 11 HITECH ................................................................................................................................ 12 Confidentiality of Alcohol and Drug Abuse Patient Records (Part 2).................................. 13 Protecting Select Conditions / Types of Data........................................................................ 14 Mental Health ....................................................................................................................... 14 Data Regarding Minors ........................................................................................................ 14 Intimate Partner Violence and Sexual Violence.................................................................... 15 Genetic Information.............................................................................................................. 16 HIV-Related Information ...................................................................................................... 17 OPPORTUNITIES AND CHALLENGES IN ADVANCING DATA SEGMENTATION.... 18 Technical Considerations ....................................................................................................... 20 Legacy Systems ..................................................................................................................... 20 Data Entry............................................................................................................................. 21 Locating Data in the System ................................................................................................. 22 Terminology & Codes ........................................................................................................... 22 Building Intelligence............................................................................................................. 23 Conveying Information Sharing Across Multiple Systems.................................................... 24 Defining Sensitivity ................................................................................................................. 24 Consumer Engagement .......................................................................................................... 27 Capacity ................................................................................................................................ 27 Motivation............................................................................................................................. 29 Logistics ................................................................................................................................ 30 Provider Reluctance................................................................................................................ 31 Quality and Safety Concerns ................................................................................................ 31 Workflow Implications .......................................................................................................... 33 Ability to Accommodate Patient Expectations...................................................................... 34 Liability Concerns................................................................................................................. 35 Legal Considerations .............................................................................................................. 35 HITECH out-of-pocket provision.......................................................................................... 35 Confidentiality of Alcohol and Drug Abuse Patient Records (Part 2).................................. 36 GW SPHHS iii Department of Health Policy Mental Health Information ................................................................................................... 36 Minors................................................................................................................................... 37 EXAMPLES OF SYSTEMS ENGAGING IN DATA SEGMENTATION............................. 38 Data Segmentation in the Health Care Sector ..................................................................... 38 Patient-controlled segmentation........................................................................................... 39 Microsoft HealthVault....................................................................................................... 40 Google Health ................................................................................................................... 41 Private Access, Inc............................................................................................................ 42 Individual Provider-controlled segmentation ....................................................................... 44 e-MDs ............................................................................................................................... 44 Texas Department of State Health Services Clinical Management for Behavioral Health Services (CMBHS) ........................................................................................................... 45 Other Systems........................................................................................................................ 46 Users ................................................................................................................................. 47 The Massachusetts eHealth Collaborative ................................................................... 47 Kaiser Permanente........................................................................................................ 47 Veterans Health Administration.................................................................................... 48 Tools.................................................................................................................................. 50 Indivo ............................................................................................................................ 50 InterSystems .................................................................................................................. 51 HIPAAT ......................................................................................................................... 52 International Examples .......................................................................................................... 53 Sweden .................................................................................................................................. 54 The United Kingdom............................................................................................................. 55 Canada.................................................................................................................................
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