The AACVPR Pulmonary and Cardiac
Rehabilitation Registries
Gerene Bauldoff, PhD, RN, FAACVPR
AACVPR Pulmonary Registry Comm
The Ohio State University
Disclosures
 “None”
Objectives
 Benefits of registry participation
 Current status
 Data elements, interface and reporting
features
 How to subscribe and FAQs
AACVPR Registry Committee
Chris Garvey, Bonnie Sanderson, Chairs
Todd Brown, MD, Director
Bonnie Anderson
Gerene Bauldoff
Pat Barnes
Eileen Collins
DorAnne Donesky
Joan Dugan
Kent Eichenauer
Anne Gavic
Steve Lichtman
Mike McNamara
Keri Ohren
Connie Paladenech
Diana Rohloff
Chris Schumann
Charlotte Teneback
Randy Thomas
Mark Vitcenda
Stacy Wolf
AACVPR Registry Sponsors
Registry Developer
Research tells us what we can do.
Guidelines tell us what we
should do.
Registries tell us what we’re
actually doing.
What is a “registry”?
 “Naturalistic” collection of data
 Designed to fulfill a specific purpose
 Data derived from patient’s clinical status or
processes of care patient undergoes
 Specific and consistent data definitions
 Uniform collection of data from patient to patient
Provide evidence to patients, physicians,
administrators, healthcare payers, and
regulators that cardiac and pulmonary
rehabilitation produce improvements in
patients’ health outcomes beyond what can
be expected or achieved through “usual care”.
Mission
Why should we participate?
Participation Benefits
 Strengthen the understanding and
awareness of the impact of CR and PR
 Supports AACVPR recommendations of
outcome tracking and quality improvement
 Linking registry data with Program
Certification application
Participation Benefits
 Easy and convenient way of organizing
outcomes and utilization data
 Immediate feedback regarding performance
 Demonstrates your commitment to
improving patient care
 Raises status of your services in healthcare
system
COPD
83.4 kg
females
75yrs1650 ft
Current Status: PR Registry
 June, 2013 launch
 156 programs actively participating Over
7,500 patient records entered to date
PR Registry Data Elements
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Demographics
Admitting diagnoses and comorbidities
Anthropometric values, smoking status
Pulmonary function values
Functional capacity (6MWD)
Dyspnea/Psychosocial/HRQoL assessments
O2 use, prescription, system type
Healthcare utilization/events/mortality
Programmatic outcomes
Supported Assessment Tools
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Modified MRC
UCSD SOBQ
CES-D
PHQ-9
PSRF Survey
HADS
GDS 15 and 30
 CRQ
 St. George Respiratory
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Questionnaire
SF-36
Ferrans & Powers QLI
Dartmouth COOP
COPD Assessment Test
See the “Data Elements ” document on
the Registry web site for more
information about registry variables
Coming in 2015…
 Get ready for a new and improved AACVPR Pulmonary
Rehabilitation Registry experience. Enhancements are coming
for the AACVPR Pulmonary Rehabilitation Registry:
– New Performance Report displaying your program’s patient outcomes
in a number of key areas compared to state and national benchmarks
– Updates to data sets in the following areas: pulmonary function,
dyspnea, psychosocial outcomes, hospitalization and physical activity
– Improved user interface to provide helpful field tips and definitions
– Addition of more choices to several fields for more precise data entry
414.01
83.4 kg
females
75yrs1650 ft
CR Registry Data Elements
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Demographics
Admitting diagnoses and comorbidities
Anthropometric, lipid, glucose values
Functional capacity (6MWD, peak METs, ETT METs)
Psychosocial/HRQoL assessments
Healthcare utilization/events
Programmatic outcomes
Supported Assessment Tools
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CES-D
PHQ-9
PSRF Survey
MacNew
BDI-2
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Duke Activity Status Index
SF-36/SF-12
Ferrans & Powers QLI
Dartmouth COOP
Supported Dietary Assessment Tools
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Diet Habit Survey
Rate Your Plate-Heart
MEDFICTS (from ATP-3)
Block Dietary Fat Screener
Resources for all tools available on
AACVPR Registry Resources site
Current Status: CR Registry
 390 active programs
 89,000+ patient records entered
Real Value
Getting Started
www.aacvpr.org/Resources/OutpatientDataRegistries
www.aacvpr.org/PRRegistry
www.aacvpr.org/CRRegistry
Application Steps
 Designate Principal User through Application
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form (follow directions on registry page)
Log in and go to “My Programs”
Principal User updates program information
(used for both Registry and Certification apps)
Principal User designates secondary users
Check subscription process on Process
dashboard
Test Pulmonary Program
 Review Facility and
Program information
for accuracy
 Update information
as necessary
 Complete program
roster
 Add “secondary”
users (required)
Subscription Steps
 Read, sign and return Participation
Agreement
 Pay subscription fees
 View training webcast
 Complete data entry test
Important Documents
 Frequently Asked Questions (FAQs)
– Everything about everything
 Data Elements list
– List of all fields in Registry
 Definitions and Comments
– Description of selected elements and definitions
 Registry User Guide
– How to get around the Registry interface
 Data sheets
– Tool for capturing outcomes data
registry@aacvpr.org
Registry Tour
Reporting features
 Individual Patient Outcomes summary
 Program Outcomes Summary Report
 Program Comparison Report (like-size,
state, national benchmarks)
 Performance Report (CR only)
 Data Extraction utilities
Frequently Asked Questions
(or Answers to FAQs)
Participation Agreement and Legal
 IRB not required per HIPAA regulations;
however, local institution may require review
 Patient consent not required
 AACVPR Participation Agreement document
required as basis for agreement; some language
can be modified/added if needed
 Program does NOT need to be AACVPR-certified
in order to participate
Training
 Principal User responsible for seeing that
secondary users trained and following protocols
 ALL users must view Registry webcast and enter
test data before being given access rights
 Review documents, review documents, review
documents
Data entry
 Enter as much data as needed to track
patient health and outcomes
 Very few required data points, and a
handful of “highly recommended” ones
Registry Patient Assessment Tools
 No “required” tools
 Mix of free tools and tools requiring a license
 Supported tools not provided—programs must
secure required licenses and scoring algorithms.
Telemetry/Registry solutions
 Working with partners on methods for
uploads
 Vendors will be contacting customers with
information
Questions?
 Subscription
 Legal
 Technical
 Clinical
registry@aacvpr.org
or
312.321.5146
www.aacvpr.org/CRegistry
www.aacvpr.org/PRegistry
registry@aacvpr.org
312.321.5146
Thank You!