Transcript 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?
Registry linked to QI plan
1)
•
Part of a larger process (Care
Model)
Team approach
Provider champion
Targeted measures
2)
3)
4)
•
Avoids “bloat”
Data are evaluated, and then
used
5)
•
PDSA Cycle
Plan for growth
6)
•
•
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 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.
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:
◦ 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 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
◦
◦

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=E
MC-ND142
Online Registry Improves Diabetes Care in Kansas
◦

What are the goals?
What are the incentives?
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