Patient Reported Measures - Agency for Clinical Innovation · - Patient Reported Measures (PRMs) - Risk Stratification • The Agency for Clinical Innovation was tasked with leading

Patient Reported Measures

Tuesday 11th August 2015

Mel Tinsley | Program Manager | ACI

Outcomes that matter to patients

Welcome and House keeping

#patientreportedmeasures Photography and consent Fire exits Bathrooms Breaks… coffee Phones

Background

• In 2014, the NSW Government announced the NSW Integrated Care Strategy.

• The strategy includes the development of key state-wide enablers: - IT systems - Monitoring and Evaluation - Patient Reported Measures (PRMs) - Risk Stratification

• The Agency for Clinical Innovation was tasked with leading the development of Patient Reported Measures and Risk Stratification.


AIM: Reduce burden to clinicians and patients whilst

adding value by:

Enabling patients to provide direct,

timely feedback about their health related

outcomes and experiences to drive

improvement and integration of health

care across NSW.

4 pilot sites across NSW Health

Mid North Coast Northern Sydney Western NSW Western Sydney

PRM Pilot overview

• Developing a comprehensive approach based on local need and circumstances including target populations.

• 4 pilot sites will implement PRMs (commencing Oct 15) by:

• Agreeing on core and optional PRMs questions/ tools. • Developing systems and processes to capture PRMs

from the target population. • Developing systems and processes to use PRMs results

to improve individual patient care, inform local service improvement, and evaluate the NSW Integrated Care Strategy.

Timeline

What's the difference? Interim Solution vs. October Pilot

Interim Solution: Currently being used by 3 demonstrator sites (May 2015-

May 2016) Collecting PROM & PREM for evaluation purposes only No Direct, timely feedback, no shared care planning

October Pilot Used by 4 pilots Collecting PROM & Condition specific for real time feedback

and shared care planning/decision making PREM used for service improvement Will be used to evaluate the Integrated Care Strategy

Literature Review

Question sets (PROMS http://www.nihpromis.org/)

Question Sets (PREMS) No. Core/

Optional

Domains Questions 1 2 3 4 5 6 Comment from v.6

1 Core Collection/ administration process Who completed this questionnaire for the patient? Self/ Patient Carer/ Family

member

Healthcare

provider/ Staff

Interpreter Other Added interpreter

Timeframe for questions is: "In the last 6 months"

2 Core Respect for patients’ values,

preferences & expressed needs

How often did healthcare providers ask about things in your life that affect

your health?

Always Often Sometimes Rarely Never

3 Core Information, communication &

education

Were you involved as much as you wanted to be in decisions about your

care and treatment?

Always Often Sometimes Rarely Never New response

option and

rephrasing of 4 Core Involvement of family & friends;

transition & continuity

Were your family or carer involved as much as you wanted them to be in

decisions about your care and treatment?

Always Often Sometimes Rarely Never Not

applicable

New response

option and

rephrasing of 5 Core Coordination & integration of care Was there an ongoing care plan to address your health condition? Yes, definitely Yes, somewhat No Unsure/ Unknown Wording changed

for clarification and

consistency.

Added unsure/

unknown as a

6 Core Coordination & integration of care;


When healthcare providers planned care or treatment with you, did it

happen?

Always Often Sometimes Rarely Never Wording changed

to planned care

with you.


education

Did a healthcare provider talk with you about how you were supposed to

take your medicine?

Yes, definitely Yes, somewhat No Not applicable - I did

not have any new

medicine

8 Core Coordination & integration of care;


How often did your healthcare providers work well together as a team? Always Often Sometimes Rarely Never Wording and

response options

changed to reflect

team-based

approach to care.


education

How often did healthcare providers give you easy to understand

information about your health care?


10 Core Overall care rating How easy was it for you to manage your health care? Very easy Easy Neither easy nor

difficult

Difficult Very difficult Removed

duplication of "last 6

months".

11 Core Overall self-efficacy rating How confident were you that you could manage your health condition on

a regular basis?

Completely

confident

Very confident Moderately

confident

Not very confident Not at all confident Added "health" to

wording for

clarification.

OPTIONAL QUESTIONS

12 Optional Access; transition & continuity Was there a place you USUALLY went to when you needed health care? Yes No Changed to past

tense.

13 Optional Access; transition & continuity If yes, was it: (select the main place only) GP / family

doctor clinic

Medical

specialist clinic

Hospital emergency

department

Hospital outpatient

clinic

Community

health centre

Other

(specify___)

14 Optional Information, communication &

education

How often did your healthcare providers seem to know the important

information about your medical history?


15 Optional Coordination & integration of care;

Information, communication &

education

How often did your healthcare providers help you identify the most

important things for you to do for your health condition?


16 Optional Access; Coordination & integration

of care

Did you need services at home to help you take care of your health? Yes No

17 Optional Access; Coordination & integration

of care

If yes, how often did your healthcare providers help you get these

services?


18 Optional Coordination & integration of care;


Is there one healthcare provider who coordinates your healthcare? Yes, definitely Yes, somewhat No Don’t know

19 Optional Coordination & integration of care Was the care you received for your health care condition complete? Yes, definitely Yes, somewhat No Don’t know Working changed to

reflect response

options.

20 Optional Information, communication &

education

When you asked questions about your health care, did you get answers

you could understand?

Always Often Sometimes Rarely Never I didn't ask

questions

21 Optional Overall self-efficacy rating How important do you think it is to be able to manage your health

conditions at home?

Very Important Important Somewhat

important

Not very important Not at all

important

I didn't ask

questions

Added as an

optional question

based on WSyd

feedback

Question sets (Condition specific - http://www.ichom.org/)

What clinicians’ value

What patient’s value

ICHOM Standard Set for Coronary Artery Disease (2013)

Question sets

Patient Reported Measures – mapping

Mapping PRM journey across 4 pilot sites Reducing the burden Identifying Clinical Workflows What are you already using? Opportunities for PROM/PREM What do the reports look like Identifying opportunities Linkages

Patient Reported Measures - visits

Mapping out processes Talking through question sets Discussing engagement strategies/co-design Identifying barriers and enablers Clinicians Managers Consumers

Scenario

Patient Identified

PRMs collected Consultation Action Information

sharing Ongoing

monitoring

Risk stratification

GP/ED presentation

Contact Centre

Self/ carer/ clinician

Clinic/ home

Paper/ tablet/ phone/ web

Readministration

Alerts

Review and discuss PRMs

results

Develop care plan

Self-management

support

Referrals

Shared care plan

PCEHR

Education and training

General Practice Primary Health Care Acute settings Clinicians/Managers/Executive Consumers

What are Patient

Reported Measures?

IT Solution

Linda Murray – eHealth NSW

NSW Health Integrated Care Program IT System/ Infrastructure for PRMs

Linda Murray, Program Manager, Integrated Care

eHealth NSW

Tuesday 11 August 2015

Patient Reported Measures Workshop

• Recruited additional resources to support each of the Demonstrator sites with their delivery plans, providing relevant guidance and assessing technology options and system integration capabilities

• Working with ACI to support their ICT progress in respect to the Patient Reported Measures (PRMs) and;

• Shared Care Planning, which has been highlighted as another high priority area for technology enablement across the state*

• Patient identification and tracking is also being scoped for technology solutions, similar at first to the process used by CDM (flags/alerts in EMR)

• Information on Unique Health Identifiers is available on the eHealth Intranet http://intranet.hss.health.nsw.gov.au/about/ehealth/innovation-strategy-and-architecture/integrated-care/update

eHealth NSW has been working to support the IC Strategy in a number of ways, across several statewide enabler areas

http://intranet.hss.health.nsw.gov.au/about/ehealth/innovation-strategy-and-architecture/integrated-care/update











The Priority Areas

1

2

3

4

5

1. Shared Care Planning Support

2. Patient Reported Measures (PRM) Pilot

3. Patient Register and Tracking for Analytics

4. Secure Messaging*

5. Risk Stratification*

1

2

3

4

5

eHealth Enabler

Priorities

*Solution scoping and requirements to be further developed & validated

5

The PRM tool is one of the five core building blocks of IC Architecture and is a key priority area for eHealth NSW (Standalone with integration with patient record / shared care plan tools planned for the future)

May June July August September October November December January February March April May June


(Pilot)Go Live

Update evaluation tool output (requirements / vender select)

Confirm costs

& funding

Vendor Contracting

Evaluation of Shared Care POC initiatives and plan ongoing adoptions

Develop PRM Integration Plan (e.g. clinical repository)

Pilot & Support PRM POC Project (ACI & 4 sites)Set-Up Infrastructure Test

Vendor T&C Review

Application Configuration: Set-Up Questions & User Roles

Identify Installation & Hosting Requirements

Confirm Hosting Design & Costs

DESIGN BUILD TEST RUN

ACI & eHealthACI eHealthLegend

Application Management, User Support & TrainingMobilise PRM Demo Sites & ACI Support

Resourcs Develop Use Cases & Training Materials

Engage vendors, confirm business requirements and visit Case Sites

Pre-Go Live Engagement and Planning (Pilot Sites / Target Question Sets)

Install Solution

Infrastructure and hosting set-up is on track and will be completed in time for the scheduled October ‘Go Live’ date

eHealth NSW will be available to support the ACI and pilot LHDs with

implementation relating to infrastructure and hosting as well as helping to

assess the pilot tool for further rollout and/or enhancements and/or system

integration e.g. with electronic records or other IC tools (SCP)

Activity Outputs Support ACI to define business requirements

and evaluate candidate solutions for survey tool

Provide advice on technical aspects of the solution and assessment of applications

PRM Survey evaluation tool developed to support requirements and preferred tool selection

Question logic to be used is based on the PROMIS survey questions

Preferred application vendor selected (REDCAP)

(Completed June 2015) Infrastructure Services engaged and detailed

design / architecture / costing underway for solution hosting

Confirmation of design, costs, and delivery timeline (Completed July 2015)

Privacy Security Assessment Framework (PSAF) documentation drafted for security and privacy review

PSAF Stage 0/1 review Plan for security testing/penetration testing (Completed July 2015)

• Confirm budget, install hosting infrastructure, install solution

• Hosted PRM solution (Scheduled completion end August 2015)

• Test solution – including security/penetration testing

• Security / User Acceptance Testing Complete (Scheduled completion end September 2015)

• Support ACI (if required) during roll-out ‘Go Live’ in October 2015

eHealth NSW is engaged in a number of activities to facilitate successful rollout of REDCap to pilot sites

Consumers

PRM Registration and Consent

PRM Answer Display

Presentation of Individual, Longitudinal and Aggregated results (graphs, statistics etc)

Multi-Channel PRM Questionnaire

Complete PRM Questionnaire

SelfManagement

Inform Clinical Decision-Making

Discuss PRM Results

PRM Data

- Question Lists- Answer Storage

- Task / Reminder Storage- Registration & Consent- Patient Demographics

PRM Management Services

- Question Selection (Generic PROM, Disease-Specific PROM, Generic PREM)

- Task Management- Alert Management

- Answer View Management- Rules Engine (frequency, reminders)

Inform Questionnaire Generation Alerts

RemindersAlerts and

Tasks

Define Rules

Key channels from the proposed end-state PRMs solution will be available in the pilot

The eHealth NSW IC Team is fully resourced and available to assist with any infrastructure / hosting queries or issues

The PRM Workstream is a key priority and a number of resources have been assigned to facilitate delivery

Contacts Dr Michael Costello | eHealth NSW Director Innovation, Strategy and Architecture Tower B, Level 13, Zenith Centre, 821 Pacific Highway, Chatswood NSW 2067 Tel +61 2 8644 2259 | email: [email protected] Linda Murray | eHealth NSW Program Manager, Integrated Care Tower B, Level 13, Zenith Centre, 821 Pacific Highway, Chatswood NSW 2067 Tel +61 2 8907 1429 | email: [email protected] Rebecca Lissing | eHealth NSW Business Analyst, Integrated Care, Innovation, Strategy and Architecture Tower B, Level 13, Zenith Centre, 821 Pacific Highway, Chatswood NSW 2067 Tel +61 8907 1428 | email: [email protected]

mailto:[email protected]



REDCap- Research Electronic Data Capture

REDCap was initially developed and deployed by the

Office of Research Informatics at Vanderbilt University Nashville, TN, USA

User-friendly Secure web-based application Cost-effective 1536 active institutional partners 92 countries

REDCap

Surveys are designed by REDCap administrators and are available to users via web link or on the REDCap mobile app

Easy to use surveys Data entered is transmitted securely to the central servers maintained by eHealth Data is analysed and reports sent to nominated recipients.

REDCap

Confidential – Restricted access

Suitable for PROMs – Longitudinal surveys

In built scheduler In built capacity to create

reports Requires minimal input

from providers

PRM – United States America

Clinician buy in from the start is essential It is a long road…. Don’t underestimate the patient voice Research and evidence to demonstrate EBP No one size fits all approach Infrastructure Adding value whilst decreasing burden: Clinician and Patients Look at any PRM carefully Don’t need ethics – it is usual care What’s in it for me? The PRM Journey Language Ownership at every level DON’T IMPACT CLINICAL WORKFLOW

Level 4, Sage Building 67 Albert Avenue, Chatswood NSW 2067 PO Box 699 Chatswood NSW 2057

T + 61 2 9464 4666 F + 61 2 9464 4728

[email protected]

www.aci.health.nsw.gov.au

Melissa Tinsley Program Manager – PRM

(02) 9464 4649 [email protected]

Open Source Platform for Measuring Health Outcomes and a Learning Based System

S e a n M a c k e y, M D , P h D I m m e d i a t e P a s t P r e s i d e n t , A m e r i c a n A c a d e m y o f P a i n M e d i c i n e R e d l i c h P r o f e s s o r C h i e f , D i v i s i o n o f P a i n M e d i c i n e D i r e c t o r, S t a n f o r d S y s t e m s N e u r o s c i e n c e a n d P a i n L a b S t a n f o r d U n i v e r s i t y h t t p : / / p a i n c e n t e r. s t a n f o r d . e d u h t t p : / / s n a p l . s t a n f o r d . e d u s m a c k e y @ s t a n f o r d . e d u


Disclosures – Funding Sources NIH Pain Consortium – Partial funding for CHOIR HHSN 271201200728P

National Center of Complementary and Alternative Medicine P01 AT006651

National Institutes of Drug Abuse (NIDA) K24 DA029262 T32 DA035165 R01DA035484

Redlich Pain Research Endowment Dodie and John Rosekrans Pain Research Endowment No industry conflicts

Sandra with Complex Regional Pain Syndrome (CRPS)

“It’s that feeling, if you’re digging through the bottom of a cooler, and you just get that burning sensation because your arm is so cold,”

How do you know whether you have made Sandra better?

How do you know when a certain treatment is better than another for a specific patient?

The Systems Challenge and Complexity of Pain

From Ming Kao

HypervigilanceAvoidance

Pain-Related

FearPain

CatastrophizingDisuse

DisabilityPain

Experience

Spontaneous Discharge

InjuryInflammation

Receptor Sensitization

Convergence

DescendingInhibition

Receptor field expansion

Neg. AffectivityThreatening Info

BiomechanicalAlterations

VascularInfectiousTraumaic

AutoimmuneMetabolicIatrogenic

AnxietyDepression

Augmented Muscle ActivityInc. Stiffness

Dec. Stiffness

Atrophy

Compromised Muscle Activity

Reflex Inhibition

Impaired Proprioception

Modified Motor Planning

Cortical Reorganization

Spasms & Spindle

Discharge

BiomedicalPsychological

Biomechanical

Insomnia Fatigue

SleepSleep

Disorders

Opioid Use

Opioid Tolerance

Aberrant Opioid Use

Opioid-Induced

Hyperalgesia

Adverse Childhood

Event

Substance Use

Disorder

PTSD

Genetic Load

Cognitive RepraisalExpressive Suppresion

Acceptance

Solicitous Response

Punishing Response

Mindfulness

Anxiety Sensitivity

Resilience

Suicide

Locus of Control

Coping Skills

Non-opioid

Rx

Iatrogenesis

Surgeries

Somatization

Psychosis

The Problem with Randomized Controlled Trials and Chronic Pain

10% of persons with chronic pain qualify for clinical trials

90% do not qualify!!!

Barriers Against Translation and High Throughput Technologies

Experiences With Pain – Institute of Medicine Report

• Affects 100 Million Americans • Indirect/direct medical expenses

US $560-$630 Billion/year • Pain can become a disease IOM Finding 2-2. More consistent data on

pain are needed. Bottom line: We need better data!!

Institute of Medicine – Relieving Pain In America 2011

Institute of Medicine: Need for Patient Registries and Learning Health Systems

“There is a need for greater development and use of patient outcome registries that can support point-of-care treatment decision making, as well as for aggregation of large numbers of patients to enable assessment of the safety and effectiveness of therapies. “We seek the development of a learning health system in which science, informatics, incentives and culture are aligned for continuous improvement and innovation – with best practices seamlessly embedded in the delivery process and new knowledge captured as an integral byproduct of the delivery experience”

Medical Practice Pressures on Measuring Outcomes

http://www.healthit.gov/providers-professionals/how-attain-meaningful-use

• Open source, open standard, highly flexible, and free health and treatment registry and platform for a learning health system

• Point of care decision making • Comparative effectiveness research • Longitudinal outcomes research • Large simple trial designs • Software based decision making • Comprehensive assessment of: Physical, psychological and social functioning and

global health

CHOIR: Data Capture System Features • Easy to use data entry for patients,

staff and clinicians • Clinical workflow support e.g. notify

patient of survey URL prior to clinical appointment

• Data import support for automated data entry (e.g. EMR) for medications and other treatments, medical conditions, costs, etc.

• Point of care reporting to support clinical decision making

• Short version – you can’t do it. • Computational complexity of modern patient

reported outcomes (PROs) are beyond what can be provided by traditional EMR.

• With modern PROs, software decision support, and development of learning based systems, expect rapid algorithm development and frequent code revisions.

• Better to off-load modern PRO processing/infrastructure to a separate system

• Also allows rapid development and implementation of features

Why don’t you just use (or your favorite EMR)?

Stanford Pain Management Center

• Interdisciplinary, coordinated comprehensive approach to pain management

• Use of validated outcomes assuring optimal patient assessment and care

• Over 14,000 patient visits (2014) • 21 Physician Pain Faculty All Boarded in Pain Medicine

• Anesthesiology • Internal Medicine • Physiatry • Neurology • Addiction Medicine

• 4 Pain Psychologists Faculty • Pain Psychology training program

• Physical therapy, Nutrition, Biofeedback, Acupuncture • Strong connection and translation with pain research

group

Initial and Follow-Up Surveys

• Initial Survey – 22 min • Demographics • Prior Treatments, Pain Beliefs • Interactive Body Map • PROMIS 9 domain measures:

• Pain Intensity, Pain Behavior, Pain Interference, Fatigue, Physical Function, Depression, Anxiety, Sleep Disturbance, Sleep Related Impairment

• Pain Catastrophizing Questionnaire (PCS) • Follow up Survey – 9 min

• Interactive Body Map • PROMIS 9 domain measures as above • PCS

Started in 2004 as a part of the NIH Roadmap

“Psychometrically validated, dynamic system to measure PROs efficiently in study participants with a wide range of chronic diseases and demographic characteristics.”

Based on Item-Response Theory Free

Physical Health

Social Health

Mental Health

Global Health

Pain is a product of the brain!

Pain

Pain is a product of the brain!

Pain

Cognition: attention, distraction, hypervigilance, catastrophising, re-appraisal, hypnotic suggestion

Context: beliefs, expectations, placebo, motivation

Mood: depression, anxiety, catastrophising, emotional context

Individual differences: genetics, gender, history of injury, atrophy

PROMIS: Why the need for improved patient reported outcome (PRO) measures? Classical Testing Theory limitations Validation needed when applying to new patient population Missing data problem Ceiling and floor effects High patient burden Many cost $ Planned benefits of the PROMIS measures Responsiveness to differences across treatment groups. Improved performance where floor and ceiling effects are expected. Potential to reduce patient burden and costs Normative comparisons Item-response theory (IRT) combined with computerized adaptive testing (CAT) Highly efficient compared to classic testing theory (CTT)

Computerized Adaptive Testing (CAT)

Computerized Adaptive Testing (CAT) Applied to Health Care

Suppose our subject score is 73 on a 1 to 100 scale of Physical Function

0 100 73

No

t 1

N

ot

2

No

t 3

N

ot

4

Yes

73

N

ot

74

No

t 9

9

Classic Testing Theory

IRT with CAT

0 100 73

vs. 5

0?

vs. 7

0?

vs. 7

5?

vs. 7

3?

vs. 6

3?

Found!

Physical Functioning Item Bank

Item1

Item2

Item3

Item4

Item5

Item6

Item7

Item8

Item9

Itemn

100500

Are you able to get in and out of bed?

Are you able to stand without losing your balance for 1 minute?

Are you able to walk from one room to another?

Are you able to walk a block on flat ground?

Are you able to run or jog for two miles?

Are you able to run five miles?


Item1

Item2

Item3

Item4

Item5

Item6

Item7

Item8

Item9

Itemn

100500








Item1

Item2

Item3

Item4

Item5

Item6

Item7

Item8

Item9

Itemn

100500








Item1

Item2

Item3

Item4

Item5

Item6

Item7

Item8

Item9

Itemn

100500








Item1

Item2

Item3

Item4

Item5

Item6

Item7

Item8

Item9

Itemn

100500








Item1

Item2

Item3

Item4

Item5

Item6

Item7

Item8

Item9

Itemn

100500







The PROMIS Metric: Comparing to the US Population

T Score Mean = 50 SD = 10 Referenced to the US general population

https://dhs.stanford.edu/spatial-humanities/comparing-population-density-and-wikipedia-density-on-gis-day/

Current Status

• Stanford Pain Management Center in 2012 • Integrated smoothly using web and iPad/Android

devices • Staff involvement early. • Minimal complaints from staff or patients to date! • Approximately 8,000 unique patients and 40,000

longitudinal data assessments • Implemented local CAT engine – CHOIR CAT • Changed the culture and how we care for patients

– Like Sandra!

CHOIR CAT: API-based CAT algorithms Incurs Significant Latency

Unavoidable Network Latency in Use of NW API

SystemSubject NW API

Start InitiatePrepare

assessment

Save assessment

Present Item

DoItem

ChooseItem

QueryItem

Present Item

Respond to Item

RecordItem

StoppingCondition

Record Item

Calculate Score

Return Score

Yes

RecordScore

StopAssessmentComplete

NoNetwork Latency

• Round-trip HTTPS traffic from Palo Alto, California to Chicago, Illinois incurs significant latency and degraded patient experience

• Exacerbated by the nature of CAT which requires re-calculation with each response

• Motivation for development of our own CAT algorithm • Multi-objective framework

that incorporates additional features from educational testing

CHOIR CAT: Reduction in Patient Survey Burden

CHOIR as a Platform in Pain Research and Clinical Practice

•Generation of preliminary data •Dynamic studies of pain •Systems studies of pain •Comparative effectiveness •Large simple trials/pragmatic trials

•Recording individual patient data •Dynamic treatment of pain •Systems treatment of pain •Learning based systems of pain

Clinical Practice

Research

Desipramine Low-dose Naltrexone

Fatigue

CHOIR: Using Dynamic Outcomes to Inform Care for Sandra

No change in Function!

Health Education

Desipramine Low-dose Naltrexone

Fatigue

CHOIR: Using Dynamic Outcomes to Inform Care for Sandra

CHOIR Computer-Assisted Documentation

CHOIR Primary Care: Pain Management Toolkit

CHOIR Primary Care: Opioid Taper Tool

CHOIR Primary Care: Opioid Taper Tool

Research-grade clinical data generation + Decision support

• Bedside research-grade diagnostic criteria that generates customized documentations for • Subjective findings • Objective findings • Impression and plan • Patient instructions

• Covering the most common and the most

complex diagnoses in Chronic Pain • CRPS • Fibromyalgia • Hypermobility • SEID (previously known as CFS) • 46 peripheral nerve entrapments • 431 non-headache, non-spine regional pain

syndromes

Using CHOIR to generate “research quality” clinical data

69 Abernethy et al, Health Services Research, 2008

Data with equal quality of a clinical trial

Quality data can be used for: • Clinical trials

• Pilot data • Large simple

trial designs • Clinical decision

making • Improving quality

care and monitoring • Comparative

effectiveness research

CHOIR’s ability to rapidly iterate and improve EMR code review/release process • A necessity given the wide

ranging critical roles of EMRs • Typically measured in months

• IOM released report on April 28, 2015 • Mackey sent to group at 3:14pm • CHOIR Provider new Core Metrics user

interface live on April 30, 2015 at 7:31am

• CHOIR: from concept to live beta in 40 hours

Clinically-integrated registry enables studies of larger orders of magnitude

• 573 interventional studies for back pain in ClinicalTrials.Gov

• Subjects • Mean 651 (SD 10,447) • Median 100 (IQR 196)

• CHOIR • 5,306 subjects • 13,157 complete

longitudinal data points

Patient characteristics: Stanford Pain Management Center

Patient Characterization

N = 2,082 Patients

• Foot Pain: 30.5% of patients

• Foot pain not identified by clinic physicians or IOM report as a primary location of pain

Low Back Pain Pelvic Pain Fibromyalgia CRPS Headache/Migraine

CHOIR and Overlapping Pain Conditions

Dynamics of Patients’ Response to Treatment

Non-Responders

Responders

CHOIR ProviderClinical Operations & Decision Support

-.406

Pain

Fatigue

Depression

Physical Function

Sleep Disturbance

.201

.253

.354

-.193

-.108

-.342

.345

.406

-.309

Pain

Fatigue

Depression

Pain Interference

Sleep Disturbance

.201

.253

.354

.360

.164

.315

.345

.406

-.309

Fatigue is: • Common in chronic pain • Understudied as a target of intervention • Likely a confluence of physical and psychological factors • A significant barrier to physical functioning, likely mediating effects of pain on physical dysfunction

Sturgeon, Darnall, Kao, & Mackey (Under review).

Physical and Psychological Correlates of Fatigue and Physical Function: A CHOIR Study

CHOIR ProviderClinical Operations & Decision Support

77

-7

-6

-5

-4

-3

-2

-1

0

Effect of FCR – CHOIR Outcomes

Big Outcomes Data Enables True Systems Biology Approach to Medicine

Gene Express

ion

Patient Reporte

d Outcom

es

Resting State

Volumetry

ActivityTractography

Labs & Diagnostics

Documentation

Psychometrics

Whole Genome Seq

SNPtyping

Immunomics

Microbiomics

Metabolomics

Transcriptomics

Quantified Self

Experiential Sampling

Information

1,000,000,000

Billions

1,000,000

Millions

1,000

Thousands

1

Individuals

BedsideBytes BenchBedside

Press-Ganey Patient Satisfaction and the Challenges of Chronic Pain

“The Best Defense is a Good Offense”…

System To Enhance Patient eXperience (STEPx)

Accecss & Scheduling

Admission & Check-in

Physician & Provider

Care Coordination

Outcomes

Nursing & AssistantNurses

Referring

Provider

Patient

Scheduler

Front Office

BackOffice

An unmet need • Comprehensive capture of patient

experience touchpoints • Concise item stems • Actionable results • Integrated into CHOIR • Open source and free

Covers, and extends, all the domains of existing patient satisfaction surveys, including:

• Press Ganey • Hospital Consumer Assessment of

Healthcare Providers and Systems (HCAHPS)

• TOPS

83

Patients with Severe Pain, High Depression or High Pain Catastrophizing: Much Less Likely to Recommend

84

Pain Center Optimization of Patient Experience (PCOPE)

Pain Clinic Optimization of Patient Experience (PCOPE)Phase 1: Model Building and Algorithm Development

CHOIRSTRIDE STEPXPain COPE NLP Engine

Ph

ase

1

Medical Co-morbidities

Psychosocial

Pain Characteristics

Overall

Admissions

Provider

Nursing

Care Coordination

Scheduling

Outcomes

Free-Text

Machine Learning

Algorithm Yelp Data

NLP Feature Extraction

Pain Clinic Optimization of Patient Experience (PCOPE). Phase 2: Risk Stratification and Targeted Care Coordination

CHOIR& STRIDE

SPEQPain COPE Clinic StaffCare Coordinator Social Work ProvidersPatient Patient Satisfaction

Fo

ste

rin

g L

HC

7 d

ay

s P

re-V

isit

Vis

itP

hase

Medical Co-morbidities

Psychosocial

Pain Characteristics

Overall

Admissions

Provider

Nursing

Care Coordination

Scheduling

Outcomes

Schedules NPV

Fills out CHOIR

Case Analysis

Machine Learning

Algorithm

High RiskPoor

Satisfaction

Notify Staff and Providers Identify

Resource Needs and Solutions

Pre-Visit Medical,

Psychology, PT

Needs

Preparations for Visit

Pre-visit Discussion

with Referring ProviderCare

CoordinationCare

Coordination

Optimize Scheduling

Predict

Presents for Visit

Coordinated Interdsiciplinary

Pain Management

Case Follow-Up

Identify Solutions for

Barriers

Post-Visit Assessmentof Low Risk

Patients

Care Coordination

Follow-Up & Issues

Plan Adaptation

Discussion with PCP and

Referring ProviderFeedback

Optimize scheduling

Poor Satisfaction

Real-time Patient

Experience Monitoring

High RiskPoor

SatisfactionYesNo

Assess

Care Coordination

Knowledge Base

Monthly Patient Experience M&M Conference

Continuous Improvement

Awarded Stanford Health Care Innovation Challenge grant (2015)

Perioperative CHOIR Preoperative emotional distress highly predictive of: • Poorer surgical outcomes • Increased pain intensity and duration • Increased use and duration of postop

opioids • Increased length of stay

The Present and Future

• Specific practice modules (e.g. Pain Psychology, Pain Physical Therapy) and conditions (e.g. Headache, Orofacial Pain, Pelvic Pain). Hospital module to connect clinic to hospitalized patients

• Clinical note generation (e.g. CHOIR Provider), condition “calculators” • Software based decision support

• Opioid risk stratification and documentation • Recommended referrals to psychology, physical therapy, etc • Targeted education and therapies

• Results integrated with EPIC/EMR • Currently under development by Univ Florida

• Patient Reported Outcomes On Demand • Means of dynamically ordering patient reported outcomes as needed

• Aggregation of data for national registry

• Consolidation of data across sites within specialty

• Advanced CAT features • Genetics: Stanford GenePool • Activity monitors

• FitBit, Jawbone, Basis • Mobile device integration for daily experiential

sampling. Passive metadata. • Quantitative sensory testing • Automatic natural language processing • Consumer-facing front-end • Patient Satisfaction

The Present and Future

Collaborations

• Expanding to multiple clinics/sites and expanding outside of pain • Stanford Children’s Hospital: Pediatric Pain

Center • Other Academic Pain Centers • Ortho CHOIR, GI CHOIR, etc

• Currently providing source code with minimal licensing restrictions.

• Crowdsourcing approach to software development • Donations accepted • Change health care nationally!!!

Trainee opportunities for CHOIR • Provides opportunities for trainees (e.g.

clinical fellows, postdocs, medical students, etc) to easily devise and conduct a research study.

• NIH NIDA T32 “Interdisciplinary Research Training in Pain and Substance Use Disorders” PD: Mackey

• More info at http://snapl.Stanford.edu

Thanks to and Collaborators • NIH Pain Consortium • Redlich Pain Research Endowment • Stanford Center for Clinical Informatics

• Michael Halaas • Susan Weber • Garrick Olson • Teresa Pacht

• Stanford Systems Neuroscience and Pain Lab (SNAPL) • Northwestern/PROMIS

• Karon Cook, PhD • University of Florida

• Chris Harle, PhD • Medical College of Wisconsin

• Rob Hurley, MD, PhD • University of Pittsburgh

• Ajay Wasan, MD • Stanford-Packard Pediatric Pain Center

• Elliot Krane, MD, Sam Huestis, PhD • NIH Pain Consortium

• Richard Denisco, MD (NIDA) • David Thomas, PhD • Linda Porter, PhD

Psychometric properties of Stanford Pain Management Center population

Research

Institute of Medicine: Need for Patient Registries and Learning Health Systems

PROMIS: Why the need for improved patient reported outcome (PRO) measures? Classical Testing Theory limitations Validation needed when applying to new patient population Missing data problem Ceiling and floor effects High patient burden Many cost $ Planned benefits of the PROMIS measures Responsiveness to differences across treatment groups. Improved performance where floor and ceiling effects are expected. Potential to reduce patient burden and costs Normative comparisons Item-response theory (IRT) combined with computerized adaptive testing (CAT) Highly efficient compared to classic testing theory (CTT)

CHOIR: Framework • Flexible platform to allow any survey or clinical

conditions • Headache CHOIR, Ortho CHOIR, GI CHOIR,

Primary Care CHOIR • Industry standard tools (Oracle database, Java,

Google Web Toolkit, open source libraries). No commercial vocabulary or proprietary libraries.

• NIH PROMIS computer adaptive testing (CAT) surveys and legacy instruments.

• Funded by a partnership with NIH (NIH Pain Consortium) and Stanford (Redlich Pain Endowment, Stanford Center for Clinical Informatics). • Public-private partnership

• Short version – you can’t do it. • Computational complexity and demands of

modern patient reported outcomes (PROs) are beyond what can be provided by traditional EMR.

• Significant, unpredictable, uneven demand on computational space and time from modern PROs

• Modern PROs, software decision support, and development of learning based systems - need rapid algorithm development and frequent code revisions.

• Off-load modern PRO processing/infrastructure to a separate system

Why don’t you just use

(or your favorite EMR)?

Taking the Systems Biology view of Pain Research

104 Systems View of Chronic Pain Research

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PRM Pilot sites overview

NSLHD WSLHD MNCLHD WNSWLHD

Lyn Olivetti Service Development Manager Chronic & Complex Medicine, Rehabilitation & Aged Care, NSLHD

Christine Collins

Osteoporosis Re-fracture Prevention Project Officer, NSLHD

Musculoskeletal Coordinator, Sydney North Health Network

Musculoskeletal Integrated Care Initiative

Not present: Cynthia Stanton

Sydney North Health Network Dr Rodger Laurent

Chair, Back and Neck Pain Advisory Group, NSLHD and HOD, Rheumatology, RNSH

Matt Williams

Musculoskeletal Coordinator, RNSH (Osteoarthritis Chronic Care Program)

Prof Lyn March

Chair Osteoporosis Re-fracture Prevention Advisory Group, NSLHD

Prof David Hunter

Chair Osteoarthritis Chronic Care Program Advisory Group NSLHD

Musculoskeletal problems typically account for around 18% of GP-Patient encounters 1

Common musculoskeletal conditions (osteoporosis, hip/knee osteoarthritis and acute low back pain) are associated with significant morbidity and a reduction in QOL

These patients rarely present to a care provider with a single condition, are a often likely to have multiple comorbidities

These patients face challenges in accessing appropriate intervention, and receiving coordinated care across primary and secondary health sectors

1. General Practice Activity in Australia 2012-2013. BEACH, General Practice Series No 33. Family Medicine Research Centre, University of Sydney

The Problem

Despite evidence regarding best practice clinical management for each condition there is inconsistency in clinical management of these conditions in both primary and secondary care facilities

– Inappropriate and over-utilisation of some services (e.g. surgical procedures for joint replacement, clinical management of fractures, bed days for back pain).

– Patients may experience a fragmented journey; care may differ depending on their provider, rather than their clinical presentation

The Problem

OBJECTIVE:

To improve timely access to appropriate evidence based care for residents of NSLHD with MSK conditions (OA, OP and back pain)

STRATEGY:

Concurrent initiatives in both primary care and hospital setting to improve management of MSK conditions (OA, OP and back pain)

The Challenge

OACCP

Back/Neck Pain

ORP

Hospital Clinics

Community Services and

Programs

GP + Practice Nurse

Expected Outcomes

Osteoporosis ORP

Osteoarthritis OACCP

Back Pain

Reduce incidence of subsequent fracture

Optimise pain management and

function

Optimise pain management and

function Optimise pre-surgical

condition (and surgical outcomes) and/or delay the need for

surgery Optimise management of co-morbidities

Improve quality of life Improve capacity for long-term self-management

Musculoskeletal Initiative in Primary Health

Osteoarthritis Chronic Care Program (OACCP)

Eligibility = people on the surgical waiting list for hip or knee joint replacement surgery at a NSLHD Hospital

Program consists of 9 – 12 months of contact with a multidisciplinary team to address identified needs

Patient reported outcome measures collected at baseline and at each review

Comparison of outcome measures at 12 and 26 & 52 week reviews index joint = knee (2012-

13)

Indicator

Initial

mean (SD)

n=401

Wk 12 change

in mean from

initial visit,

n=269

Wk 26 change

in mean from

initial visit,

n=196

Wk 52 change in

mean from

initial visit,

n=104

Body mass index* 30.8 (6.70) -0.4, p<0.001 -0.7, p<0.001

-0.9, p<0.001

Waist circumference

(cm)

100.9

(14.29) -1.4, p<0.001 -1.9, p<0.001

-2.7, p<0.001

Pain VAS (0-10) 4.5 (2.27) -1.1, p<0.001 -1.1, p<0.001

-1.5, p<0.001

Timed up and go (sec) 11.0 (4.90) -1.4, p<0.001 -1.8, p<0.001

-2.5, p<0.001

KOOS ADL (0- 100)#

48.0

(20.45) 6.8, p<0.001 8.4, p<0.001

9.0, p<0.001

KOOS Pain (0- 100)#

46.0

(19.42) 6.3, p<0.001 8.5, p<0.001

10.1, p<0.001

Six Minute Walk Test

(m)

409.1

(117.45) 35.2, p<0.001. 43.6, p<0.001

55.3, p<0.001

Key performance indicators(Updated Oct 2014)

Number of people seen = 740

Removed from waiting list = 55 (16% from WL)

Accelerated to surgery = 30

RNSH / Ryde

OACCP Service

Northern Sydney region, General Practice

“OACCP”

Enablers

ICT buy-in

– Local eMR2 developments

– Data linkage, analytics and visualisation tools

Advisory Group buy-in

Evaluation Plan linked to ACI MS Network and PHI project

Patient Reported Measures Update – August 2015

Western Sydney Integrated Care Program

ACI Workshop l Aug 2015

Presenter:

Donna Sedgman, Primary Care Integration Manager

Western Sydney Integrated Care Demonstrator

Model of Care Re-cap


Key components of model: Disease cohorts – COPD, heart failure, coronary artery disease, diabetes Patients + GP practices registered for ICP Dynamic Shared Care Planning / PCMH Care Facilitation GP Support Line Specialty Rapid Access Specialty Stabilisation Service Building capacity in Primary Care/General Practice




Local teams – representative across primary + secondary

settings

WSICP PRM Task Group

Name Position

Donna Sedgman Integration Manager, Primary Care

Rowena Bellwood Integration Manager, Specialty Services

Marina Fulcher Primary Care Manager,

WSPHN (WentWest)

Mary Roberts Respiratory CNC, RACS WMH

Heena Puri Care Facilitator

Janis Patterson GP Liaison Nurse (Primary Care)

Ken + Marj Freeman Consumer Advisory

Western Sydney Integrated Care Project

Change management strategies aimed at:

Identifying + building concept into appropriate positions

Assessment of specific barriers

Appropriateness in process design - partnering

Supported training (ACI/AFS)+ assistance with change management

Implementation Strategies + linkage to change




Mar2015

Initial Interim PRM Approach drafted + presented to IC Clinician Working Group.

May 2015

Interim PRM WSICP question set finalised.

Questions loaded onto tablets.

Initial training on tablets by AFS/ACI.

June 2015

PRM Focus Groups conducted with CDMP patients (ACI).

ACI PRM Presentation at GP Information Evening.

DRAFT Guideline developed for interim PRM strategy across primary + secondary settings.

July 2015

Consultation with primary care stakeholders.

DRAFT flowchart developed.

WS Integrated Care Program GO Live (27th July).

EOI by PCMH Practices to trial tablet devices + administer PRM’s.

Aug 2015 onwards

Agreement across Primary + Secondary Settings on interim PRM processes.

Follow-up training on tablet devices.

Tablet kiosks to be installed in identified PCMH practices.

Distribution of devices to key positions – Care Facilitators, CNC’s, CNS’s

Pilot PRM’s + Refine Approach.

PRM Timeline


Within IC Program:

Data Manager = ICP Business Analyst/Data Manager

Matching of patient identifiers with PRM identifiers and PC/GP identifiers (IHI)

Building and extraction of PRM reports

Reports to be tabled at ICP Operational Meeting (MDT) + ICP Consumer Advisory

Data for local evaluation (UWS)

Within LHD/across Primary Care + General practice settings:

Agreed Reports tabled at ICP Steering Committee in project/pilot phase

PRM KPI’s reported up to the MoH

Data Management + Reporting


Planned implementation


Key principles: Patients to be provided written information about PRM’s – keep simple

Consent obtained (either as Registered ICP patient or Connecting Care)

Patient understanding of ‘who/what/where/why’ re: PRM data

PRM’s administered to both ICP registered patients and ICP candidates

PRM’s administered only once patient stabilised (in hospital setting)

PRM’s to be factored into business processes (clinic appointment or GP care planning appointment)



2. WSICP flagged patients in general practice identified for PRM

Questionnaire by Practice Staff and/or Care Facilitator

1. PENCAT data extraction in general practice

and patient selection criteria in RASS/Inpatient

setting identifying patients suitability for WS Integrated Care Program (WSICP)

2.WSICP Flagged Patients in RASS/Inpatient setting identified for PRM

Questionnaire by Integrated Care (IC) CNC/CNS

3. Patient provided information(WSICP Patient brochure or

verbally) about the questionnaire by Care Facilitator, Practice Staff or

IC CNC/CNS

5. GP practices and Integrated Care Facilitators, CNC and CNS s with e-tablet availability to

provide instruction to patient in use of the e-tablet to complete the PRM questionnaire

Does the patient meet any of the following:1. Non-english speaking?2. Needs assistance with reading + responding to questionnaire?3. An enrolled Connecting Care patient (Non-IC Patient)

4. Refer patient to Connecting Care for scheduling + electronic adminis tration of

PRM +/- Telephone Healthcare Interpreter Service**

YES

4. Care Facilitator to decide on timing + administration options (as per below) for PRM adminis tration + schedule patient

(Baseline + then 6-monthly PRM s)

NO

PRM scheduled by Care Facilitator in conjunction with GP consultation

or Shared Care Planning appointment

PRM scheduled by Care Facilitator as part of follow-up/monitoring

post-RASS visit (phone call or visit to patient in

home)

PRM scheduled by Care Facilitator as part of follow-up appointment in Stabilisation Clinic or by Integrated

Care CNC/CNS as an inpatient consultation

OPTIONS

Home

GP Practice5. If GP practice/RASS Clinic/Inpatient ward

does not have an electronic PRM kiosk, paper-based PRM questionnaire to be

handed to patient with Reply-paid envelope

(Patient s individual health identifier [IHI] to be populated in the identifying field on

form)

Hospital

1

2

3

6. Patient may opt to fill out PRM questionnaire whils t at GP Practice/RASS

Clinic/Inpatient ward or at home

7. Patient or Practice staff, Care Facilitator or IC CNC/CNS return PRM questionnaire

via reply-paid mailed envelope

9. Once questionnaire electronically

submitted, PRM data uploaded via wireless

into a cloud-based central repository

6. Patient completes PRM Questionnaire with administering s taff ensuring that

questionnaire has patients IHI entered into the identifying field and that the survey is

submitted at the conclusion

e-Tablet/Kiosk Paper-based

8. Paper-based PRM Questionnaire received by Integrated Care Office and

entered by Integrated Care Administrative Staff into an e-tablet

WSICP Patient Reported Measures (PRM s) Process Flowchart -DRAFT ONLY

10. Individual patient data (identified by IHI) downloaded by Integrated Care Data

Manager weekly and formatted into a useful PRM Report

11. Individual Patient PRM Report to be scanned and formatted into a pdf document,

matched to the patient s IHI and uploaded into Linked eHR by IC Data Manager/Care

Facilitator

12. PRM Report readily identified in Linked eHR at time of next clinical review of the patient

either in the General Practice or RASS/Inpatient setting

PRM informs clinical

decision-making

13. Patient-Reported information confirmed with patient and utilised by

clinicians in the shared care and treatment planning process

Patient consented + enrolled in

WSICP

Patient refusal of PRM questionnaire*

Notes:*Where patient refuses PRM:Paper-based form - Document on form + return Questionnaire to Integrated Care Office.E-tablet - Indicate refusal in patient declined field on electronic survey and submit questionnaire as per outlined process.

**Referral to Connecting Care Service for PRM administration:Practice Staff, IC CNC/CNS to ring Connecting Care Contact Centre 1800 113 644 + provide patient details – Name, DOB, IHI and contact details.

Patient Reported Measures in the Nambucca Shire

Nambucca Valley Integrated Care (NVIC)

Patient Reported Measures (PRMs) in the Nambucca Shire will become the focus of a working group in the Nambucca Valley Integrated Care (NVIC) Initiative

Why Nambucca Shire?

• Identified as focus for MNCLHD Integrated Care proposal – • Significant ageing population • Significant Aboriginal population • Socio-economic disadvantage and • Limited, fragmented services.

• Strong stakeholder support for an innovative initiative to better integrate patient focused care for residents of the Nambucca Shire

What do we want to do?

• Work toward a holistic patient focus

• Replace a complex model of care with a collaborative of local health and community care providers centered on the patient and their needs

• Improve communication between all stakeholders

• Reduce avoidable hospital admissions and ED presentations, and

• Use health resources more effectively

PRM Collected

Nambucca resident

attends ED triage 4/5

Assertive follow up

Risk stratification

Low risk of escalating

chronic disease

Patient Story collation and

analysis

Patient Story

Collection

High risk of escalating

chronic disease

PRN data

Develop and implement solutions

NVIC Patient Feedback Working Group

Care provided

Patient Reported Measures Plan

Assertive follow-up of residents of Nambucca Shire presenting at Emergency Departments with triage 4/5

Assess if suitable for PRMs project

Work with care provider for follow-up PRMs

Work toward integrating with existing chronic disease follow-up programs

Use responses to inform the activities of the NVIC Initiative Patient Feedback Work Group.

Next Steps Small trial of assertive follow-up

Convene NVIC Patient Feedback Working Group

PRMs education for MNCLHD including healthcare providers and Working Group

Work toward integrating with existing chronic and complex disease management programs

Use PRM data to improve and integrate health care through the NVIC Patient Feedback Working Group.

Western NSW

Integrated Care Strategy

To transform existing services into an integrated Western NSW system of care that is tailored to the needs of our rural and remote communities,

improves access to care and health outcomes, focuses on closing the Aboriginal health gap

Better Care…………Better Health…………Better Value

Local Demonstrator Sites Demonstrating redesign of delivery models across general practice, LHD primary & community health services, Aboriginal Medical Services, local rural hospital/MPS and specialist outpatient services

• 12,000 pop • GP led integrated

models of care focussed on managing chronic disease and mental health conditions with associated complex health needs.

• 4,900 pop • GP led

multidisciplinary model of care for older people with chronic and complex conditions

• Focus on at risk population

• 2,400 pop • HealthOne facility • GP led

multidisciplinary model of care for chronic and complex conditions

• New business funding models

• 8,777 pop • ACCHO • GP led

multidisciplinary model of care for chronic and complex conditions

• Minimise impact of diabetes on Aboriginal people in Dubbo

• ‘In reach’ care coordination via AHW

• Nurse Practitioner

Local demonstrator sites – work to date • Development of GP-led multidisciplinary models of care to manage high risk

patients and those with chronic and complex illnesses (including diabetes, CVD, COPD, mental illness)

• Risk stratification at the demonstrator sites using agreed clinical markers to identify those patients who would benefit most from integrating their care.

• Implementing integrated models of care, tailored to the local needs of the population, with a focus on engaging all relevant care providers within a locality

• Recruited Care Navigators based in primary care to support and manage patients enrolled in the local strategies.

• 320 people enrolled in the local integrated care projects across the 5 localities.

• Implemented the electronic shared care planning tool cdmNet in the Local Demonstrator Sites to facilitate the sharing of clinical information between relevant care providers. Note: cdmNet proving challenging……..

• Commenced collection of patient reported measures for the enrolled cohort to determine evaluate the impact of integration on their experience/health.

Patient Reported Measures - WNSW

• HREC approval received.

• Collecting all interim solution questions plus Aboriginality and a unique identifier.

• Commenced collection of PRMs via tablets in June 2015 with 74 PRMs collected to date (320 enrolled across the 5 local demonstrator sites).

• All PRMs collected in Primary Care as close to enrolment as possible and annually thereafter.

• Central point allocated responsibility for managing PRMs

• More often than not patients need assistance completing the PRMs via the tablet.

• Primary care is reporting the process can be tedious and time consuming for staff, patients and carers.

• Feedback from patients/carers indicates that there are too many questions with patients often expressing confusion around some questions i.e. “How is that question different to the last question?”

• Need to determine how to provide timely relevant feedback from the PRMs to clinicians.

• Watching with interest in regards to future direction of PRMs.

Learnings

Workshopping next steps - pilots

Pilot sites Prof Mackey Mel Tinsley

Patient Reported Measures: Outcomes that

Matter to Patients

Question Sets and Processes

Professor Madeleine King Quality of Life Office University of Sydney

Agency for Clinical Innovation PRM Workshop

11 August 2015

What are we trying to do?

• Integrated Health aims – integrated care, holistic, patient-centred, shared decision-

making – Use PRMs to inform patient-centred management of individual

patients (and facilitate shared decision-making?) – Improve patients’ self-reported experience of care, and of their

own general health and quality of life

• 4 very different settings • Evaluate improvement within and across all 4 sites • Measures – need to be fit for purpose

– 1. condition specific, for use in clinic – 2. global, PROMIS 10, for overall evaluation – Outcomes that matter to patients

PRMs and Processes • Study design

• Evaluation – of what?

• PROMs? PREMs? Shared decision-making? Is care becoming more integrated? Is care becoming more patient-centred? Are patients more satisfied with their care? Do they feel they have gained in health and improved quality of life?

• A series of evaluations – need to articulate specific question for each one

• PROMs in patient management

– Stanford experience – NSW – sites select measures to match population – Need to fit with current clinic processes

• PRMs for global evaluation – PREMS – patient experience of integrated care – PROMIS-10 – global health outcomes and quality of life

“Study design” = “Evaluation”?

• Overarching evaluation of …. << WHAT specifically? >>

– WHO to include

– WHEN to assess

– WHAT to measure

Site Level: Evaluation plan and sample size Post-intervention Target Sample Size n=400

Pre and Post

Patient Level: who to include and when to assess - Eligibility criteria, exclusion criteria - What is “baseline”? - Chronic condition, ongoing management - Recruit at first (?) chronic care visit - Assessments:

- PROMIS10 - PREMs - Condition specific

PRM Assessment Schedule

Disease Symptoms - pain, fatigue - others differ with

site and stage of disease

Functioning & well-being

• Physical

• Role

• Emotional

• Social

• Cognitive

• Sexual, body image

• Spirituality

• Financial

Treatment - benefits & toxicity - differ with treatment

and dose

Proximal Effects

Causal variables

He

alth

pro

ble

m(s

) +

tre

atm

ent(

s)

Global QOL,

Wellbeing

&

Happiness

Other aspects of life

Finances, family,

job, safety,

security

How do health problems & treatments affect a person?

Process of care

• Satisfaction with health care/providers/information

• Preferences

• Inconvenience

Distal Effects Indicator variables

PREMs

• Common set of ~13 items

• Being fine-tuned

PROM for overall evaluation

• PROMIS-10

Health problems caused by many health conditions

Pain_7 Fatigue_8

Health_1 PHYSICAL Physical Health_3 Physical Function_6 MENTAL Mental Health_4 incl

mood, cognitive fn Emotional problems_10

incl anx, depr, irrit SOCIAL Satisfaction w social

activ & relationships_5

Social roles & activities_9

Some treatments can cause

Fatigue_8

He

alth

pro

ble

m(s

) +

tre

atm

ent(

s)

QOL_2

Other aspects of life

Finances, family,

job, safety,

security

How do health problems & treatments affect a person? Where the 10 PROMIS Global items fit

Scoring the PROMIS Global-10 2 summary scores:

• Global Physical Health = Physical health + Physical activities + pain + fatigue

• Global Mental Health = QOL + mental health + satisfaction w/ social activities & relationships + emotional problems

• Convert to t-scores via conversion tables, using US norms (mean 50, SD 10)

• May be useful as outcome measures in aggregate data for evaluation of pilot programs

Individual items

• can be examined separately to provide specific information about perceptions of physical function, pain, fatigue, emotional distress, social health and general perceptions of health.

• ~ 2 mins to complete

• Separate items may be useful in managing individual patients – Identify patients at-risk of health-related problems

– Open the conversation about how to address problems

Quality of Life

0

20

40

60

80

100

Symptoms

0 2 4 6 8 10

Data show that symptom burden does affect QOL QLQ-C30 data from n=346 mixed cancer pts

QLQ-QL= 87.1 - 10.5*sympt_index + 0.33*sympt_index^2.

163

QLQ-C30 Global QOL score

Higher is better

Number of Symptoms – higher is worse

PROs for use in clinical practice

• Why bother?

• How?

– Measures

– Processes

• 5 systematic reviews to date – Valderas et al. (2008)

– Frost et al. (2007; cancer-specific)

– Marshall et al. (2006)

– Espallargues et al. (2000)

– Greenhalgh et al. (1999)

Evidence about the effect if PRO assessment in clinical practice

PRO assessment in clinical practice

What the evidence says: Improves: – communication + – awareness + Equivocal: – patient management +/- – satisfaction +/- – PROs / HRQoL +/-

Does NOT increase consultation time

Site / disease-specific PROMS What to measure? Which PRM to use?

• Include health-related issues that

– matter to the target patient group

– health care providers are responsible for and can do something about

Many PRMs to choose from!

H E L P !!! Too

many!

PRM toolkit

Choose the best tool for the job

at hand

What is the “best” tool?

• Includes health-related issues that – matter to the target patient group – health care providers are responsible for and can do

something about

• Feasible to complete

– time, cognitive & physical effort

• Psychometrically sound – Valid, reliable, responsive to change – Precise, accurate

Patient group for Integrated Care

• Heterogeneous

• Various health conditions and treatments

• Many with co-morbidities

Each site:

• What are health care providers responsible for?

• What can do something about?

Mode of Administration

• The PLACE of completion + HOW the patient completes the questionnaire

• Electronic is encouraged

– Established feasibility in oncology clinics – The only way to get real-time data capture and feedback for the

PROMs used in clinical management

• Paper & pen / phone as backup – OK for the PREMs and PROMIS-10

• Will this cause bias?

Rutherford, Costa, Mercieca-Bebber, Rice, Gabb, King. Does mode of administration of patient-reported outcome (PRO) does not cause: a meta-analysis Quality of Life Research – Accepted 10 Aug 2015

MOA review methods

included 58 studies : • English language; • compared ≥2 administration modes of a

standardised PRO instrument; • adult samples; • reported sufficient data for inclusion in a

quantitative analysis.

48 of these studies provided sufficient data for meta-analysis

MOA review RESULTS

• Forest plot of paper- and electronic-self-completion

• Plotted means on the right-hand side of the plot indicate paper/pen scores were lower than electronic (lower scores = better outcome).

• There was no systematic difference due to mode

• Effect size [95% CI] = 0.01 [-0.04, 0.05]

MOA review conclusions

• Robust evidence that there is no bias between:

– paper vs electronic self-complete

– self-complete vs phone/interviewer-assisted MOA

• Self-complete paper and electronic MOA can be used interchangeably in clinic and home settings.

• Self- and assisted-completion produce equivalent scores overall, although heterogeneity may be induced by setting.

• These results support the use of mixed MOAs within a study, which may be a useful strategy for reducing missing PRO data.

Patient Reported Measures: Outcomes that Matter to Patients

Question Sets and Processes - Discussion

Pressing issues

• Questions sets for use in clinic – Each site, each health condition

– Share across sites providing IC for the same conditions?

• Developing IT systems to capture these, convert to report for clinician to review and use in clinical consultation – Problem areas?

– What to do about them? Evidence-based? Or keep it simpler at this stage?

Patient Reported Measures: Outcomes that Matter to Patients

Question Sets and Processes - Discussion

Next steps

Level 4, Sage Building 67 Albert Avenue, Chatswood NSW 2067 PO Box 699 Chatswood NSW 2057

T + 61 2 9464 4666 F + 61 2 9464 4728

[email protected]

www.aci.health.nsw.gov.au

Melissa Tinsley Program Manager – PRM

(02) 9464 4649 [email protected]

Documents

Patient Reported Measures - Agency for Clinical Innovation · - Patient Reported Measures (PRMs) - Risk Stratification • The Agency for Clinical Innovation was tasked with leading