WVU OHSR - Data Stewardship

WVU OHSR - Data Stewardship

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 Special Thanks to Our Funders This presentation was supported by Grant/Cooperative Agreement Numbers U32/CCU322734, U59/CCU324180-03, U50/CCU321344 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. 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 About Patient Registries - AHRQ 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 Users 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 Users Guide. (Prepared by Outcome DEcIDE Center [Outcome Sciences, Inc. dba Outcome] under Contract No. HHSA29020050035ITO1.) AHRQ Publication No. 07-EHC001-1. Rockville, MD: Agency for Healthcare Research and Quality. April 2007.

Registries Then and Now 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. Part 1: Registry Planning Key

Questions: Whats the purpose of the registry? Who are the stakeholders? Whats 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 2: Registry Design 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 3: Registry Buy-In 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: http://www.rwjf.org/qualityequality/digest.jsp?id=8002&c=EM C-ND142 Online Registry Improves Diabetes Care in Kansas From HealthCare IT News: http://www.nxtbook.com/nxtbooks/medtech/hitn0608/#/16 WV FQHC received federal funding for CDEMS use Part 4: Data Collection & Quality Assurance

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 Contact Information Cecil Pollard, Director (304) 293-1080 [email protected] Trisha Petitte, Assistant Director, Health Improvement Consultant (304) 293-1084 [email protected] Mary Swim, Applications Programmer, Technical Support (304) 293-1079 [email protected]

Adam Baus, Program Coordinator, Sr., Technical Support (304) 293-1083 [email protected] Nell Stuart, Health Improvement Consultant (304) 276-3785 [email protected] Marie Gravely, Health Improvement Consultant (304) 482-6016 [email protected] Office website: wvuohsr.org

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