Back to Basics

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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

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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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If you don't know where you are going, you might
wind up someplace else. Yogi Berra
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What has worked well?

• 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

• 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.

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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.
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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)

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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?

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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
  8002cEMC-ND142
• Online Registry Improves Diabetes Care in Kansas
• From HealthCare IT News http//www.nxtbook.com/nx
  tbooks/medtech/hitn0608//16
• 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
Cecil Pollard, Director [phone]
cpollard_at_hsc.wvu.edu Trisha Petitte, Assistant
Director, Health Improvement Consultant (304)
293-1084 tpetitte_at_hsc.wvu.edu Mary Swim,
Applications Programmer, Technical
Support [phone] mswim_at_hsc.wvu.edu
Adam Baus, Program Coordinator, Sr., Technical
Support [phone] abaus_at_hsc.wvu.edu
Nell Stuart, Health Improvement
Consultant [phone] nstuart_at_hsc.wvu.edu
Marie Gravely, Health Improvement
Consultant [phone] mgravely_at_hsc.wvu.ed
u
Office website wvuohsr.org