CASE-BASED SURVEILLANCE TOOLKIT Tools, Tips and Strategies for Strong Surveillance May 2015 National Alliance of State & Territorial AIDS Directors Acknowledgements For more than 23 years, the National Alliance of State & Territorial AIDS Directors (NASTAD) has worked to strengthen the role and promote the success of health departments as they develop health systems that reduce HIV/AIDS and viral hepatitis incidence, ensure quality care and treatment, and improve health outcomes. NASTAD’s lead authors, Genevive Meredith, Robin Flanagan, and Anna Carroll developed this toolkit drawing on the experience developed through NASTAD’s support for case-based surveillance system development and quality utilization in PEPFAR-funded countries over the last 10 years. Technical and experiential input, as well as practical tools and materials, have been compiled from NASTAD’s work in Haiti, Trinidad and Tobago, Guyana, Ethiopia, Zambia and Botswana, as well as from a series of Regional Integrated HIV/AIDS Surveillance Workshops implemented with CDC/DGHA/Epidemiology and Strategic Information Branch (ESIB) in Asia, East Africa, West Africa, the Caribbean, and Central America. Specific thanks and recognition go to: NASTAD Global staff: Girma Assefa, Annie Coriolan, Sheena De Freitas, Michelle Batchelor, Mark Griswold, Luisa Pessoa-Brandão, Barbara Roussel, Anne Sites, and Lucy Slater NASTAD Technical Assistance providers: Chris Delcher, Jamie Cotnoir, Bethsabet de Leon- Justiniano, Mari Gasiorowicz, Jennifer Gunderman, Eve Mokotoff, Amy Robbins, and Jami Stockdale. Acknowledgements June 2014 National Alliance of State & Territorial AIDS Directors 444 North Capitol Street, NW, Suite 339 Washington, D.C. 20001-1512 (202)434-8090 (phone) www.NASTAD.org Development of this publication was supported by the Department of Health and Human Services (DHHS)/ Centers for Disease Control and Prevention (CDC) Division of Global HIV/AIDS (DGHA) Cooperative Agreement 5U2GPS001617. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of CDC. Table of Contents Acronyms .................................................................................................................................................... 6 Introduction: Case-based Surveillance of HIV.................................................................................... 7 Surveillance Overview ....................................................................................................................... 8 A. HIV Surveillance ...................................................................................................................... 9 B. Case-based Surveillance of HIV ........................................................................................... 10 C. Case-based Surveillance and Second Generation Surveillance ....................................... 13 D. Structure of This Toolkit ....................................................................................................... 14 Setting the Stage Case-based Surveillance System Development ...................................... 15 Module 1: Building Blocks of a Case-based Surveillance System ............................................... 17 1. Overview ........................................................................................................................................... 18 1.1: System Governance and Partner Engagement ....................................................................... 19 A. Leadership and Governance ................................................................................................ 20 B. Regulatory Framework .......................................................................................................... 21 Table Contents of C. Stakeholder Engagement ...................................................................................................... 28 1.2: Human Resources to Support Case-based Surveillance ....................................................... 30 A. Basic Human Resource Needs ............................................................................................. 31 B. Advanced Human Resource Needs ..................................................................................... 36 C. Training and Skills Building ................................................................................................. 37 D. Human Resource Support and Supervision ...................................................................... 38 E. Human Resources Policies .................................................................................................... 39 1.3: Case Reporting Process ............................................................................................................... 41 A. Reportable Events .................................................................................................................. 42 B. Data Sources ........................................................................................................................... 46 C. Data Collection ....................................................................................................................... 48 D. Case Reporting Policies and Procedures ............................................................................ 51 1 1.4: Data Systems to Manage Case Surveillance Data .................................................................. 52 A. Data Transfer .......................................................................................................................... 53 B. Electronic Information System ............................................................................................. 57 C. Data Cleaning and Quality Assurance ................................................................................ 59 D. Case Matching ........................................................................................................................ 60 E. Related Policies and Procedures .......................................................................................... 62 1.5: Using Case-Based Surveillance Data ....................................................................................... 65 A. Surveillance System and Process Monitoring .................................................................... 66 B. Epidemiological Profiling ...................................................................................................... 69 C. Quality Improvement ............................................................................................................ 85 D. Data Use Related Policies and Procedures ......................................................................... 87 Module 2: Building and Improving a Case-based Surveillance System ...................................... 89 2.0: Overview ........................................................................................................................................ 90 2.1: Envisioning Your Case-based Surveillance System ............................................................. 92 A. Define What You Want To Know ........................................................................................ 93 B. Determine What Data You Will Need To Answer Your Questions ................................ 94 C. Consider If The Desired Data Exist, and Where ................................................................ 95 D. Consider How Cases May Be Reported .............................................................................. 97 Table Contents of E. Consider The Human Resources Required ......................................................................... 98 F. Summarize Your [draft] Vision ............................................................................................. 99 2.2: Establishing Buy-in and Support ............................................................................................ 100 A. Identify Key Stakeholders and Decision Makers ............................................................ 100 B. Meet with Key Stakeholders and Decision Makers ......................................................... 101 C. Establish a Technical Working Group ............................................................................... 102 2.3: Implementing an Environmental Scan .................................................................................. 104 A. Plan the Environmental Scan ............................................................................................. 105 B. Conduct the Environmental Scan ...................................................................................... 107 C. Summarize your Findings................................................................................................... 109 2 2.4: Define and Plan Your Case-based Surveillance System .................................................... 112 A. Design the System ................................................................................................................ 113 B. Develop Required Policy ..................................................................................................... 114 C. Develop the Case Report Form .......................................................................................... 116 D. Design Data Transfer Systems ........................................................................................... 117 E. Design Data Management