Presented by:Deb Bulych, Director Supportive Care

Patient Reported Outcomes (PRO)

What We’ll Learn Today

What are Patient Reported Outcomes (Pro’s)

Benefits of PRO’s SCA Implementation 2 PRO’s chosen, Screening for Distress

and the Ambulatory Outpatient Satisfaction Survey (AOPSS)

Progress to date Lessons learned

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Patient/Family Centered Care

What is Patient/Family Centered Care? Is the “Provision of care that is respectful

of and responsive to individual patient/family preferences, needs and values and ensures that these values guide all clinical decisions.

It is “working with patients and families rather than doing things “to” or “for them”.

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Patient/Family Centered Care

It is making an intentional effort to start with what is important (what matters) to the patient.

To improve the patient's cancer experience by; Increase quality of life for those living with

and after being diagnosed with cancer. Reduce the burden of suffering throughout

the cancer experience.

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Person-Centered Care

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Patients want to be involved in the decisions that affect the

care they receive

Care organized “WITH” patients and their families to meet their needs and wants

Person-Centred Care

Care that incorporates patient needs, but is still doing “TO” and “FOR” patients

Patient-Focused CareCare organized for the

system and those who work in it

System-Centred Care

Demand for increased transparency and

accountability from institutionsSlide courtesy of CCO

Canadian Partnership Against Cancer (CPAC)Patient Experience Outcomes Initiatives GOAL: to improve the patient experience across

the cancer journey through standardized measurement that accelerates optimal care and health related outcomes across Canada

EXPECTED RESULT: By 2017, all jurisdictions should have established a measurement and reporting cycle for patient experience that facilitates action to drive improvement through use of standardized, validated screening and patient-reported outcome assessment tools and programmatic interventions

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Project Background

Three year (2014 to 2017) project funded by the Canadian Partnership against Cancer (CPAC)

Involves the three prairie provinces; MB, SK and AB.

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What are Patient Reported Outcomes (PROs)

PROs are outcomes that meet the following criteria: 1) Are reported by the patient

2) Matter to the patient

3) Are distinct from disease-focused outcomes

Examples: Pain, fatigue, anxiety, depression Patient experience/satisfaction Quality of care, Quality of life

Slide courtesy of AHS 8

What are Patient Reported Outcomes? (PROs) Tools that are used to gain insight from the

patient’s perspective into the perceived effects that the impact of the disease and treatments have on aspects of their health, their lifestyle and subsequently their quality of life.

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Why are PROs important?

Routine and proper use of patient reported outcomes;

Improves over all patient health outcome Improves process of care Standardizes cancer care Enhances patient/Family Centered Care

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Using the Evidence:Purpose to our Work

Patient engagement is recognized as a key component of achieving high quality healthcare

In order to do this we need to have a system that regularly collects feedback from patients and has the mechanisms in place to utilize this feedback to drive care at multiple levels

Goal: Harness Patient Reported Outcomes to improve system effectiveness and patient experience

Slide courtesy of AHS

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Using the Evidence:Initiative Objectives

1) Create a comprehensive and integrated tri-provincial approach to the collection, analysis, and reporting of PROs

2) Utilize and leverage existing information technology infrastructure and electronic medical records to facilitate PRO collection while minimizing patient and clinician burden

3) Facilitate a systematic process for reporting, sharing and utilizing PRO data at the various levels

4) Facilitate inter and intra-provincial collaboration around quality improvement (QI) initiatives

5) Create a culture of continual learning through QI that can be evaluated through subsequent PROs

Slide courtesy of AHS

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Enhance Person-Centred Care

Gather PROs and Conduct Focused QI

Improve Patient

Experience

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Scope

Patient Reported Outcomes Screening for Distress Tool (ESAS & CPC) AOPSS Satisfaction Survey Data

Development a clear process for data review and patient engagement/feedback about priorities for action

Collect PROs electronically where possible Maximize the use of ARIA and electronic reporting Connect PRO with clinical response Building capacity for tailored data to program level and

provincial

Two Quality Improvement Initiatives in response to provincial data

Slide courtesy of AHS14

Screening for Distress

Why? Thorough multi-symptom screen directly

from the patient Enhances provision of person-centered

care Providing right care for the right person at

the right time Cost and quality implications Evidence informed

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How does Distress Screening Improve Person-Centered Cancer Care?

Facilitates a shift in focus from tumor focus discussion to: Comprehensive discussions between

clinicians, patients and families Foster therapeutic relationships Facilitate information exchange Respond to emotions and uncertainty Supportive decision making Enable patient/family self-management

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Demographic and clinical characteristics of patients participating in distress screening

Slide courtesy of SCA Epidemiology and Performance Measurement Department18

ESAS scores frequency distribution

Slide courtesy of SCA Epidemiology and Performance Measurement Department19

Distribution of patient responses to CPC

Slide courtesy of SCA Epidemiology and Performance Measurement Department20

Referral status of patients by ESAS symptom for scores between 5 and 10

Slide courtesy of SCA Epidemiology and Performance Measurement Department21

Frequency distribution of referrals, by clinic site

Slide courtesy of SCA Epidemiology and Performance Measurement Department22

Using the Evidence: S4D Reporting: Inputs & Ideas S4D

ESASScores

By domain

Domain compare

Managed By

ReferralDeclined

CPCDomain items

Managed by

ReferralDeclined

OtherProvided By

ReferralsBy groups

Not completed

Priority Concern

Not Reviewed

- What- When- Why- Who- How

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The Future of S4D

Electronic data entry and reporting Real time data leads to analysis and

quality improvement work Increase patient quality of life and improve

the patient experience

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AOPSS – What the evidence says?

Why? AOPSS was completed in 2004, 2006, 2008 and 2013, and the

analysis from 2013 has identified key patient experience needs for consideration The three dimensions of care most in need of improvement,

based on 2013 survey results were: Physical comfort Information, communication and education Coordination and continuity of care

The three targeted initiatives we have been working to meet those needs are:

Journal for cancer patients The Peer Navigation Program Palliative Care Pain and Symptom Management

Program25

Utilizing PROs to drive care at various levels

National

Core set of indicators that can be reported at a national level

Provincial

Aggregate data for AdministratorsTargeted QI to impact areas of high symptom burden

Program Level

Point of Care

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Slide courtesy of AHS

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Province Specific Indicators

Secondary PRO collection; specific to QI project

Secondary PRO collection; specific to QI project

Analyze DataAnalyze Data

Quality Improvement Selection•Select QI/bolster efforts on previous QI

Quality Improvement Selection•Select QI/bolster efforts on previous QI

Primary PRO Collection•Screening Tool, EQ5D, AOPSS

Primary PRO Collection•Screening Tool, EQ5D, AOPSS

ImplementImplement

•QI specific Evaluation•Additional PROs used by each Province

Slide courtesy of AHS27

Progress to Date:Initiative Timeline

20142017

20162015

Phase 1: Planning and Initiation March 2014 to December 1, 2014 Tri-provincial initiative plan AB charter and implementation plan

Phase 2: PRO Collection and AnalysisDecember 2014 to September 30, 2015Establishing and implementing IT approachWorking with early adopters

Phase 3: Knowledge MobilizationOctober 1, 2015 to October 31, 2016Develop structures to utilize the data to drive QI Implement 2 QI projects

Phase 4: Evaluation and Reporting

November 1, 2016 to January 31, 2017

Slide courtesy of AHS

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Lessons Learned

1. Strong desire to use evidence to improve patient/family experience

2. Culture shift to patient reported outcomes from disease focused out comes

3. Use of technology to gather evidence is welcome once reports generated prove useful

4. Utilizing existing technology adds to sustainability

5. Must consider burden to IT as infrastructure is built

6. Repeated PDSA cycles are required in all quality improvement work

7. Remain flexible and never stop asking why? – let the evidence speak and inform!

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