Back to Basics – Electronic Patient Registry Essentials Adam Baus MA, MPH West Virginia University Department of Community Medicine Office of Health Services Research National CDEMS Support Group Webinar 01/27/2010

This presentation was supported by Grant/Cooperative Agreement Numbers U32/CCU322734, U59/CCU , U50/CCU from the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention. Special Thanks to Our Funders

“If you don't know where you are going, you might wind up someplace else.” ~Yogi Berra

What has worked well? 1) Registry linked to QI plan Part of a larger process (Care Model) 2) Team approach 3) Provider champion 4) Targeted measures Avoids “bloat” 5) Data are evaluated, and then used PDSA Cycle 6) Plan for growth EMR/EHR implementation Linking CDEMS to EMR/EHR data

Understanding what a registry is and why they are useful is essential to success ◦Registries differ from EHRs / EMRs ◦STRENGTH in disease management / reporting Available resource: “Registries for Evaluating Patient Outcomes: A User’s Guide” ◦Published by the Agency for Healthcare Research and Quality (AHRQ) ◦Handbook for creating, operating and evaluating registries ◦In simple terms: What are good registry practices? Citation: Gliklich RE, Dreyer NA, eds. Registries for Evaluating Patient Outcomes: A User’s Guide. (Prepared by Outcome DEcIDE Center [Outcome Sciences, Inc. dba Outcome] under Contract No. HHSA ITO1.) AHRQ Publication No. 07-EHC Rockville, MD: Agency for Healthcare Research and Quality. April About Patient Registries - AHRQ

1974 – E.M. Brooke, in a 1974 publication of the World Health Organization, describes registries for health information as “a file of documents containing uniform information about individual persons, collected in a systematic and comprehensive way, in order to serve a predetermined purpose.” 2007 – AHRQ describes a patient registry as “an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes.” Registries “Then and Now”

Key Questions: ◦What’s the purpose of the registry? ◦Who are the stakeholders? ◦What’s the scope and target population? ◦Is it feasible? The registry team and advisors should be selected based on expertise and experience. ◦Plan for registry governance and oversight ◦Data access ◦Publications ◦Change management (EMR use, someday) Part 1: Registry Planning

Focus on the major purpose of the registry ◦Keep it practical, and achievable Data elements: ◦What data elements are absolutely necessary? ◦Which are desirable but not essential? Where can the data be found? ◦Are existing data available for import into your registry? Part 2: Registry Design

Buy-in effects the overall quality of the data and whether or not the data are used ◦What are the goals? ◦What are the incentives? California Clinics Receive Funding to Enhance Chronic Disease Care, Using Electronic Registries ◦From the California HealthCare Foundation: MC-ND142 MC-ND142 Online Registry Improves Diabetes Care in Kansas ◦From HealthCare IT News: WV FQHC received federal funding for CDEMS use Part 3: Registry Buy-In

◦Quality data (and meeting your goals) depends on proper registry structure, data definitions, user training and problem solving ◦Points to consider:  Data collection  Data cleaning  Data storing  Data monitoring / reviewing  Reporting Part 4: Data Collection & Quality Assurance

Cecil Pollard, Director (304) Trisha Petitte, Assistant Director, Health Improvement Consultant (304) Mary Swim, Applications Programmer, Technical Support (304) Adam Baus, Program Coordinator, Sr., Technical Support (304) Nell Stuart, Health Improvement Consultant (304) Marie Gravely, Health Improvement Consultant (304) Office website: wvuohsr.orgwvuohsr.org Contact Information