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

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

Origin of Registries –Sweden

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.

Who Manages Registries?

• Medical Specialty Societies

• Health Plans

• Patient Advocacy Organizations

• Federal and State Governments

• For-profit Companies and Non-profit

Organizations

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

Look at Some of the National Options!

How Does a Registry Collect Data?

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

Clinical Registry Information Flow

Provider documents patient care

EHR

RegistryProvider

performance report

Provider reviews report

Patients can

enter their own

data into some

registries

How can I improve my

performance?

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: https://download.ama-assn.org/resources/doc/cqi/x-pub/pcpi-richardson-102915.pdf

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

AJRR is supported by hospitals, health insurers, and

the following groups:

Supporters

20 2656

79

122

158177

219242

269292

388

417

467

522

612677

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 # ofhospitals*

20152012 2013

Nu

mb

er o

f H

osp

ital

s

2014N=24,971

procedures from 63 hospital ls

N= 43,823procedures from

123 hospitals

AJRR 2012-2016 Progress

N= 211,721procedures from

252 hospitals

N= 350,154 procedures from

464 hospitals

Where Are We Now?

September 2014

The National Registry:All 50 States

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%)

Demand Reporting &

Electronic Dashboard System

TrainingAccessing and ComparingYour Data

AJRR Dashboard

AJRR Dashboard – Reports

AJRR Dashboard

AJRR Dashboard

AJRR Dashboard

AJRR Dashboard

Joe GreeneUniversity of Wisconsin

Department of Orthopedics and Rehabilitation

Registry Participation 101

A Simple Step-by-Step Guide from AJRR

The Acquisition and Reporting of Patient

Reported Outcomes

Joe GreeneUniversity of Wisconsin

Department of Orthopedics and Rehabilitation

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

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

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

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

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

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

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

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

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

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

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)

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

Questionnaire Volume

Pilot Go-Live

October 16th

Questionnaire Volume

Pilot Go-Live

October 16th

% QNRs completed in MyChart

% MyChart Active Patients per #

of Encounters

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

Phase 2 Considerations

Quality and Outcomes

Research

Clinical Reporting

Registry Reporting

Government and Reporting

Third Party Payors and Bundling

Marketing

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)

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

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!

Questions

Joe Greene (JGreene@uwhealth.org)

Orthopedics Project Manager

Ryley O’Brien (RO’Brien@uwhealth.org)

Patient Assessment Tools Workgroup Facilitator

Sara Balster and Johnna Bledsoe

(Sbalster@uwhealth.org)

(Jbledsoe@uwhealth.org)

IS Project Managers

Leandra Frank (Leandra.Frank@uwmf.wisc.edu)

IS Analyst, Hardware

Bret Wagner (bwagner@huronconsultinggroup.com)

Huron Consulting, Director of Portals and Population Health

AJRR Patient Reported Outcome Measures (Level III) Platform

• 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 www.ajrr.net

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

• 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

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?

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)?

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

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?

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

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

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

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:

Questions

American Joint Replacement Registry

info@ajrr.net

847.292.0530

http://www.ajrr.net

65

Managing Orthopedic Episodes of Care

www.wellbe.me

Wellbe is an authorized vendor to submit your PRO data to AJRR!