This document summarizes a presentation on implementing patient reported outcomes (PROs) to improve patient-centered care. It discusses collecting PRO data through distress screening tools and patient satisfaction surveys, analyzing the data, and using it to select and evaluate quality improvement initiatives. PROs are outcomes that patients report on issues like symptoms, experience of care, and quality of life. The presentation outlines the benefits of PROs, Saskatchewan Cancer Agency's implementation including two PRO tools and progress to date, and lessons learned around using a phased approach and technology to gather and apply PRO evidence to enhance care.

1. Presented by:
Deb Bulych, Director Supportive Care
Patient Reported
Outcomes (PRO)

2. 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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3. 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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4. 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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5. 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
Care
Care organized for the
system and those who
work in it
System-Centred
Care
Demand for increased
transparency and
accountability from institutions
Slide courtesy of CCO

6. 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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7. 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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8. 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

9. 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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10. 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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11. 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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12. 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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13. Enhance Person-
Centred Care
Gather PROs
and Conduct
Focused QI
Improve
Patient
Experience
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14. 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 AHS
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15. 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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17. 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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18. Demographic and clinical characteristics of
patients participating in distress screening
Slide courtesy of SCA Epidemiology and Performance Measurement Department
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19. ESAS scores frequency distribution
Slide courtesy of SCA Epidemiology and Performance Measurement Department
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20. Distribution of patient responses to CPC
Slide courtesy of SCA Epidemiology and Performance Measurement Department
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21. Referral status of patients by ESAS
symptom for scores between 5 and 10
Slide courtesy of SCA Epidemiology and Performance Measurement Department
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22. Frequency distribution of referrals, by
clinic site
Slide courtesy of SCA Epidemiology and Performance Measurement Department
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23. Using the Evidence: S4D Reporting: Inputs & Ideas
- What
- When
- Why
- Who
- How
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24. 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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25. 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
Program
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26. Utilizing PROs to drive care at various
levels
National
Provincial
Program Level
Point of Care
• Core set of indicators that can be
reported at a national level
• Aggregate data for Administrators
• Targeted QI to impact areas of
high symptom burden
• Aggregate data for tumor group
• Trends across province with
similar population
• Real time information
• Drive patient care delivery
Slide courtesy of AHS
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27. Province Specific Indicators
Secondary PRO collection; specific to
QI project
Secondary PRO collection; specific
to QI project
Analyze Data
Quality Improvement Selection
•Select QI/bolster efforts on previous QI
Primary PRO Collection
•Screening Tool, EQ5D, AOPSS
Implement
•QI specific Evaluation
•Additional PROs used by each Province
Slide courtesy of AHS
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28. Progress to Date:
Initiative Timeline
2014
2017
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 Analysis
December 2014 to September 30, 2015
Establishing and implementing IT approach
Working with early adopters
Phase 3: Knowledge Mobilization
October 1, 2015 to October 31, 2016
Develop 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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29. 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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