1. The AACVPR Pulmonary and Cardiac Rehabilitation Registries Gerene Bauldoff, PhD, RN, FAACVPR AACVPR Pulmonary Registry Comm The Ohio State University

2. Disclosures  “None”

3. Objectives  Benefits of registry participation  Current status  Data elements, interface and reporting features  How to subscribe and FAQs

4. 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

5. AACVPR Registry Sponsors

6. Registry Developer

7. Research tells us what we can do. Guidelines tell us what we should do. Registries tell us what we’re actually doing.

8. 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

9. 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

10. Why should we participate?

11. 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

12. 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

13. 75yrs COPD 1650 ft 83.4 kg females

14. Current Status: PR Registry  June, 2013 launch  156 programs actively participating Over 7,500 patient records entered to date

15. PR Registry Data Elements  Demographics  Admitting diagnoses and comorbidities  Anthropometric values, smoking status  Pulmonary function values  Functional capacity (6MWD)  Dyspnea/Psychosocial/HRQoL assessments  O 2 use, prescription, system type  Healthcare utilization/events/mortality  Programmatic outcomes

16. Supported Assessment Tools  Modified MRC  UCSD SOBQ  CES-D  PHQ-9  PSRF Survey  HADS  GDS 15 and 30  CRQ  St. George Respiratory Questionnaire  SF-36  Ferrans & Powers QLI  Dartmouth COOP  COPD Assessment Test

17. See the “Data Elements ” document on the Registry web site for more information about registry variables

18. 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 2.0

19. 75yrs 414.01 1650 ft 83.4 kg females

20. CR Registry Data Elements  Demographics  Admitting diagnoses and comorbidities  Anthropometric, lipid, glucose values  Functional capacity (6MWD, peak METs, ETT METs)  Psychosocial/HRQoL assessments  Healthcare utilization/events  Programmatic outcomes

21. Supported Assessment Tools  CES-D  PHQ-9  PSRF Survey  MacNew  BDI-2  Duke Activity Status Index  SF-36/SF-12  Ferrans & Powers QLI  Dartmouth COOP

22. Supported Dietary Assessment Tools  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

23. Current Status: CR Registry  390 active programs  89,000+ patient records entered

24. Real Value

25. Getting Started

26. ! www.aacvpr.org/Resources/OutpatientDataRegistries www.aacvpr.org/PRRegistry www.aacvpr.org/CRRegistry

27. Application Steps  Designate Principal User through Application 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

31. Test Pulmonary Program  Review Facility and Program information for accuracy  Update information as necessary  Complete program roster

32.  Add “secondary” users (required)

33. Subscription Steps  Read, sign and return Participation Agreement  Pay subscription fees  View training webcast  Complete data entry test

35. 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

36. ? registry@aacvpr.org

37. Registry Tour

42. 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

46. Frequently Asked Questions (or Answers to FAQs)

47. 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

48. 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

49. 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

50. 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.

51. Telemetry/Registry solutions  Working with partners on methods for uploads  Vendors will be contacting customers with information

52. registry@aacvpr.org or 312.321.5146 Questions? Subscription Legal Technical Clinical

53. www.aacvpr.org/PRegistry www.aacvpr.org/CRegistry !

54. registry@aacvpr.org 312.321.5146 ?

55. Thank You!