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Registry Participation 101: A Step-by-Step Guide to What You Really Need to Know from AJRR


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– Is your hospital contemplating joining a registry but you don’t know where to begin?
– Do the acronyms CJR, QCDR, and PROMs cause you angst?
– Have you heard that registry participation can count towards quality programs but you don’t understand the connection?
– Are you a surgeon needing a registry to meet Meaningful Use requirements?
– Are you in one of the 67 geographical areas mandated by the CMS’s Comprehensive Care for Joint Replacement (CJR) program?
– Is your hospital considering a patient-reported outcome measure (PROMs) program and you want to know more about what that entails?

If so, the American Joint Replacement Registry (AJRR) will walk you through everything you need to know about participating in a registry. This session will focus on best practices from over 4,500 surgeons and 675+ hospitals who have successfully implemented and engaged with the data from over 400,000 hip and knee replacement procedures. AJRR will help you to debunk the myth that submitting private health information is complicated, time consuming, and that it takes hundreds of man-hours to participate in a registry.

You’ll also learn how:
• Registry participation can support mandated quality programs – including Meaningful Use, CJR, and PQRS
• To implementing a PROM system in your hospital – what to look out for when starting and helpful tips from current users on what they have learned
• Not all data elements are mandatory – what are the different levels, what does the national registry require, and what is optional

About the Speakers:
Joe Greene is currently the Program Manager of Outreach and Development for the University of Wisconsin Hospital and Clinics in the Department of Orthopedics and Rehabilitation. In this role, Joe coordinates business and philanthropic development activities for the UW Hospital department and University of Wisconsin Department of Orthopedics and Rehabilitation. He represents the needs of all orthopedic subspecialties and has worked for the UW since 1991 when he initiated his career there as an athletic trainer and clinician. He has worked in management and administration across the Department since 1997.
In addition to his role with the UW Hospital, Joe also is the CEO and Owner of OrthoVise. OrthoVise is an Orthopedic advisory firm that assists orthopedic practices of all types with operational and business development needs. His experiences have allowed him and his advisors the opportunity to consult formally with orthopedic practices since 2010. He has particular areas of interest that include Orthopedic and Sports Medicine Program Business Development, Service Line Development, Health Information Technology and EMR Operational Optimization for Orthopedics, Innovative Service Delivery Implementation, Smart Staffing, and Workflow Enhancement.
Joe will be joined by AJRR staff who are experts in guiding individual surgeons and hospital orthopaedic service line directors through the process.

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Registry Participation 101: A Step-by-Step Guide to What You Really Need to Know from AJRR

  1. 1. Registry Participation 101: A Simple Step-by-Step Guide to Understanding What You Really Need to Know from AJRR Joe Greene University of Wisconsin—Department of Orthopedics and Rehabilitation AJRR Staff: Phil Dwyer, Program Coordinator Caryn Etkin, PhD, MPH, Director of Analytics September Cahue, MPH, Senior Registry Analyst
  2. 2. Topics and Agenda Agenda: • Introduction to clinical data registries Phil Dwyer • University of Wisconsin experience Joe Greene • Patient-Reported Outcome Measures September Cahue • Quality programs Caryn Etkin Topics: • What is a clinical data registry • Who is using registry information and why • Value of registry data • Additional information, resources
  3. 3. Origin of Registries – Sweden
  4. 4. What is a Registry? • A clinical data registry records information about the health status of patients and the health care they receive over varying periods of time • Designed to capture clinical data of importance to health care practitioners, providers, and patient. Generally, registries focus on clinical data for specific populations based on: – A disease/condition (e.g. cystic fibrosis, spina bifida) – Procedure (e.g. coronary artery bypass graft) – Device or drug (e.g. total joint replacement) • More frequently are able to capture data from multiple EHRs • Designed for quality improvement efforts, payment, research, etc.
  5. 5. Who Manages Registries? • Medical Specialty Societies • Health Plans • Patient Advocacy Organizations • Federal and State Governments • For-profit Companies and Non-profit Organizations
  6. 6. Who is Interested in Registries? • Hospitals, health systems • Private practice groups • Health plans and other payers • Researchers • Patient and consumer organizations • Federal, state, and local government
  7. 7. Look at Some of the National Options!
  8. 8. How Does a Registry Collect Data?
  9. 9. How Does a Registry Collect Data? • Push • Pull • Certification model • Manual • Linking with different databases • Departmental systems • Direct from patients • From devices Electronic Health Records Other IT systems Patients
  10. 10. Clinical Registry Information Flow Provider documents patient care EHR Registry Provider performance report Provider reviews report Patients can enter their own data into some registries How can I improve my performance?
  11. 11. More Patients, Less Burden Clinical registries Collecting structured data On more patient populations Data pull from EHRs Is becoming less dependent on chart abstraction Lowering barriers Source:
  12. 12. AJRR is a multi-stakeholder, independent, not-for-profit with diverse national constituents led by top orthopaedists We optimize patient outcomes through collection of data on all primary and revision total joint replacement procedures in the US Our mission is to enhance patient safety, improve quality of care, and reduce the cost of care Our goal is to capture 90% of all total joint replacement procedures in the U.S. AJRR Mission and Vision
  13. 13. AJRR is supported by hospitals, health insurers, and the following groups: Supporters
  14. 14. 20 26 56 79 122 158 177 219 242 269 292 388 417 467 522 612 677 0 50 100 150 200 250 300 350 400 450 500 550 600 650 700 Jan July Jan July Jan July Jan Jul Currently Total # of hospitals* 20152012 2013 NumberofHospitals 2014 N=24,971 procedures from 63 hospital ls N= 43,823 procedures from 123 hospitals AJRR 2012-2016 Progress N= 211,721 procedures from 252 hospitals N= 350,154 procedures from 464 hospitals
  15. 15. Where Are We Now? September 2014 The National Registry: All 50 States
  16. 16. Participating Institution Types Participating Institution Types • Hospitals • Academic Medical Centers • Multiple Health Systems/Networks • Ambulatory Surgery Centers • Private Practice Groups • Solo Practitioners • Hospital bed count – Small = 1-99 beds – Medium = 100-399 beds – Large = 400+ beds Teaching 25% Rural 9% Univ/ Research 11% Major Teaching (21.0%) Minor Teaching (35.6%) Non- Teaching (43.3%) Small (21.1%) Medium (48.0%) Large (30.9%)
  17. 17. Demand Reporting & Electronic Dashboard System TrainingAccessing and Comparing Your Data
  18. 18. AJRR Dashboard
  19. 19. AJRR Dashboard – Reports
  20. 20. AJRR Dashboard
  21. 21. AJRR Dashboard
  22. 22. AJRR Dashboard
  23. 23. AJRR Dashboard
  24. 24. Joe Greene University of Wisconsin Department of Orthopedics and Rehabilitation
  25. 25. Registry Participation 101 A Simple Step-by-Step Guide from AJRR The Acquisition and Reporting of Patient Reported Outcomes Joe Greene University of Wisconsin Department of Orthopedics and Rehabilitation
  26. 26. Objectives  Outline the UW Health System approach to PRO questionnaire deployment  Define current AJRR reporting status and goals  Describe Phase 1: The pilot collection of PRO data in orthopedics  Outline Phase 2: Full implementation of PRO data collection and reporting  Discuss lessons learned throughout
  27. 27. UW Health Orthopedics and Rehabilitation  UW Health Orthopedic Service Line • 600+ employees • Highly profitable service line with UW Health • Highly comprehensive  Department of Orthopedics and Rehabilitation • 29 orthopedic surgeons and 16 rehabilitation providers • 20+ PA’s and APNP’s • 5 primary care sports medicine providers  Research and Education • 25 residents and 4 fellows • 4 PhD Level Scientists and multiple post-doc’s • Robust stem cell and regenerative medicine research • Strong clinical research program
  28. 28. AJRR Data Elements Level 1 Data • Patient, Surgeon, and Procedure Data Level 2 Data • Risk Factors and Co-Morbidities Level 3 Data • Patient Reported Outcomes Level 4 Data • Radiographic Images
  29. 29. Current Status: AJRR Reporting Level 1 Reporting • Automated since June, 2014 Level 2 Reporting • Goal of automating by monthly Epic extract by June, 2016 Level 3 Reporting • Automate by monthly extract of PRO data from Epic by July, 2016 Level 4 Reporting • Automate when AJRR is ready to accept
  30. 30. UW Health System Considerations Patient Assessment Tools Workgroup Epic vs Third Party Solution Getting data in/out of Epic IT and operational workflows implications Tablet vs Kiosk vs Portal Real time access to results Copyright and cost implications
  31. 31. Discrete data storage within EMR Reporting customization Multiple data entry mechanisms Meaningful Use benefits No interface required Leveraged Epic investment Epic will improve over time Decision: Develop Epic Solution
  32. 32. Streamlined collection processes Eloquent and attractive user interfaces Better than EMR functionality at present My Recommendations Strongly consider reporting capability Interfacing ability is paramount Consider depth of their questionnaire build Third Party Solutions
  33. 33. Phase 1 Pilot Collection of PRO Data 6 Clinics at 2 different locations and approximately 100 users including Staff affected : Physicians, AT’s, PT’s, PA’s, RN’s, MA’s, Schedulers
  34. 34. Phase 1 Project Overview Resources UW Epic teams – 1024.75 hours • EpicCare Ambulatory • Cadence • MyChart • Prelude/Welcome • Training Team • Project Management • Security • Clinical Center for Knowledge Management • Server and Desktop • Programming Consultants (10 months) • MyChart • Programmer • Reporting
  35. 35. Phase 1 Questionnaires  ACL Reconstruction (Clinics: Sports Med, Sports Rehab) • VR-12 Physical & Psychological Health Form • IKDC Knee Evaluation Form • ACL-RSI Return to Sport After Injury Scale • MARX Activity Rating Scale • SANE - Single Assessment Numeric Evaluation  Total Hip Replacement (Clinic: Ortho) • VR-12 Physical & Psychological Health Form • HOOS Hip Disability & Osteoarthritis Score Survey • UCLA Activity-Level Rating Form • Modified Harris Hip Form  Low Back Pain (Clinics: Spine Ortho, Neuro, Spine PT) • VR-12 Physical & Psychological Health Form • Oswestry Low Back Pain Form
  36. 36. Phase 1 Project Overview Workflows  Assign Questionnaire Series • Option 1: Scheduling question; Reporting Workbench used by Scheduler • Option 2: Order placed by clinician  Assign a Questionnaire • Patient Entered Questionnaire Activity Available on DAR and Multi-provider schedule  Patient entered questionnaires • MyChart • Welcome (Tablet Solution)
  37. 37.  Initially sought a Windows 7 tablet • Located a product and began testing • Lack of device quantity made the decision to use Windows 8  Windows 8 models were tested (need about 75) • Dell Model: Cost ~ $600.00 (Now about $800.00) • Storage Units: Cost ~ $800.00 (Now about $800.00)  Extensive testing completed • 40 hours testing  Every questionnaire  Saved responses  Response filing  Ease of answering  Single item on each page  Auto advance Tablet Selection and Testing
  38. 38. Questionnaire Volume Pilot Go-Live October 16th
  39. 39. Questionnaire Volume Pilot Go-Live October 16th
  40. 40. % QNRs completed in MyChart
  41. 41. % MyChart Active Patients per # of Encounters
  42. 42. Phase 2 Full Implementation  Build and validate all remaining orthopedic questionnaires  Deploy at all orthopedic locations  Identify and implement all reporting Needs  Consider research and HS-IRB implications
  43. 43. Phase 2 Considerations Quality and Outcomes Research Clinical Reporting Registry Reporting Government and Reporting Third Party Payors and Bundling Marketing
  44. 44. Phase 2 New Questionnaire Build  FAAM  FAAM Sport  NDI  SRS 22  UWRI  SILS (CJR) Ped’s QL 4.0 • 5-7, 8-12, 13-18 quickDASH KOOS Knee Society Score PSFS (Flowsheet)
  45. 45. Phase 2 Reporting Automation  Clinical and Marketing Reporting • Automate Quarterly  Registry Reporting • AJRR Level 3 VR-12, HOOS, KOOS (Why? : WOMAC, Historical Database, CJR) Pre-op and 1 year  Payor and Government Reporting • CJR VR-12, HOOS, KOOS Pre-op and 1 year SILS and Oswestry Total Painful Joint Count
  46. 46. Lessons Learned  Integrated tablet and portal solution was critical  Coordinated IT and Orthopedic project management is imperative  An Epic solution was right for the UW, but may not be the best, easiest or cost effective in many cases  Consider reporting needs early  Physician and Management Champions are essential!
  47. 47. Questions Joe Greene ( Orthopedics Project Manager Ryley O’Brien (RO’ Patient Assessment Tools Workgroup Facilitator Sara Balster and Johnna Bledsoe ( ( IS Project Managers Leandra Frank ( IS Analyst, Hardware Bret Wagner ( Huron Consulting, Director of Portals and Population Health
  48. 48. AJRR Patient Reported Outcome Measures (Level III) Platform
  49. 49. • Electronic submission of PRO scores (already captured at your hospital/clinic) • AJRR will provide a data specification file – you submit data to us (similar to Level I submission) • Selected EHR vendors can submit to AJRR on your behalf • Collection direct from patients (or facilitated by clinician) via AJRR’s Level III platform How AJRR Can Accept Data Information can be found in our PRO Guide on
  50. 50. How to Start a PRO Program 1. Define your PRO team 2. Define your PRO goals 3. Determine the PRO measure/s you would like to use 4. Define the frequency for data collection 5. Develop workflow for data capture
  51. 51. • Most likely, a core group of colleagues have decided that including PROs in your practice of care for TJA may provide important information to improve patient outcomes. Beyond this core group, it will be critical to involve stakeholders at each level of patient care • Some groups to be considered: • Orthopaedic Department • Orthopaedic practice groups and clinics • Quality Department • Information Technology • Orthopaedic Service Line • Research • Rehabilitation • Hospital Administration • Patient Advocate/Patient Representative • Institutional Review Board (guidance/review) Define Your PRO team
  52. 52. Define Your PRO goals • For those interested in a PRO program, you and your colleagues will need to determine the reasons you would like to launch a PRO program • You may consider asking yourselves questions such as: • Are we launching a research initiative with specific aims? • Are we seeking comparative benchmarks to our peers? • Are we wanting to quantify our outcomes from our patients’ perspective? • Do we want to measure if patients have improved function or reduced pain? • Do we want to measure whether our patients’ overall health has improved? • What are the requirements of the payer-specific program for which we are hoping to qualify?
  53. 53. Determine the PRO Measure/s • Your reasons for implementing PRO program will direct your team to a certain instrument(s) that will allow you to meet your objectives. • For example, if your institution has decided to collect PROMs for research initiatives, you may choose an instrument that measures multiple domains. • However, if you are focused on measuring patients’ outcomes as part of your clinical care, a shorter instrument will suffice as long as it is able to detect change. Consider: 1. What does the measure assess – quality of life or function? 2. What is the cost (licensing fee) to use the form? 3. What is the associated patient burden? a. What is the length of form? b. How easy/hard is the form to complete? 4. What is the associated staff burden (FTE time)?
  54. 54. Define Frequency for PRO Data Collection • PROMs guidelines from the International Consortium for Health Outcome Measurement (ICHOM) have recommended pre-op (baseline) and one-year follow-up as appropriate time points for data collection to provide meaningful data for comparing outcomes across providers • The CJR Final Rule also advises that post-operative surveys be collected between 270 and 365 days post-surgery • AJRR’s platform will allow for other time points (e.g., three-month, six-months, etc.) to be submitted and stored in AJRR’s database. However, national benchmarks will only be reported for pre-op and one-year outcomes. • Each time point will have a two-month window for data collection
  55. 55. Develop Workflow for Data Capture Consider the following: 1. Points of patient contact 2. Staff responsibilities 3. Electronic completion versus paper capture of forms 4. Collection at clinic or allow patients to complete on their own 5. Will surgeon be using the measure responses during the patient encounter?
  56. 56. Other PROM resources • Patient-Reported Outcomes in Performance Measurement RTI document • International Consortium for Health Outcomes Measurement - Hip & Knee Osteoarthritis Data Collection Reference Guide ICHOM document • National Quality Forum – Patient Reported Outcomes (PROs) in Performance Measurement NQF document • International Society for Quality of Life Research - User’s Guide to Implementing Patient-Reported Outcomes Assessment in Clinical Practice ISOQOL document
  57. 57. Health-Related Quality of Life Measures • VR-12: VR-12 • PROMIS-10 Global: PROMIS-10 Global • SF-12: SF-12 • SF-36: SF-36 • EQ-5D: EQ-5D Joint-Specific Measures • HOOS and KOOS: HOOS and KOOS • HOOS, JR and KOOS JR.: HOOS JR and KOOS JR • Oxford Hip: Oxford Hip • Oxford Knee: Oxford Knee • KSS: Knee Society Knee Scoring System • Harris Hip Score: Harris Hip Score • WOMAC: WOMAC Other PROM resources
  58. 58. AJRR and Quality Programs • Comprehensive Care for Joint Replacement (CJR) – CJR Final Rule – AJRR's efforts related to CJR • AJRR is also a Qualified Clinical Data Registry (QCDR), which means Eligible Professionals can use our platform for the Physician Quality Reporting System (PQRS) – AJRR's QCDR Platform – QCDR Reporting • Meaningful Use
  59. 59. Additional Registry Resources • National Quality Registry Network NQRN Home Page – Registry inventory, “What is a registry” handout, registry vendor assessment • CMS Qualified Clinical Data Registries QCDR Home Page • AHRQ Registry of Patient Registries (RoPR) • Numerous other efforts:
  60. 60. Questions American Joint Replacement Registry 847.292.0530
  61. 61. 65 Managing Orthopedic Episodes of Care Wellbe is an authorized vendor to submit your PRO data to AJRR!