Back to basics electronic patient registry essentials
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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.

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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


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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.

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What has worked well? someplace else.”

  • Registry linked to QI plan

    • Part of a larger process (Care Model)

  • Team approach

  • Provider champion

  • Targeted measures

    • Avoids “bloat”

  • Data are evaluated, and then used

    • PDSA Cycle

  • Plan for growth

    • EMR/EHR implementation

    • Linking CDEMS to EMR/EHR data

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About Patient Registries - AHRQ someplace else.”

  • 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. HHSA29020050035ITO1.) AHRQ Publication No. 07-EHC001-1. Rockville, MD: Agency for Healthcare Research and Quality. April 2007.

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Registries “Then and Now” someplace else.”

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.”

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Part 1: Registry Planning someplace else.”

  • 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)

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Part 2: Registry Design someplace else.”

  • 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?

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Part 3: Registry Buy-In someplace else.”

  • 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:

  • Online Registry Improves Diabetes Care in Kansas

    • From HealthCare IT News:

  • WV FQHC received federal funding for CDEMS use

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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

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Contact Information Assurance

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: