Patient Reported Outcomes (PRO)

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

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

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”.

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.

5. Person-Centered Care 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 Patient-Focused Care • Care organized for the system and those who work in it • Care that incorporates patient needs, but is still doing “TO” and “FOR” patients Person-Centred Care 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

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.

8. What are Patient Reported Outcomes (PROs) • PROs are outcomes that meet the following criteria: • Are reported by the patient • Matter to the patient • Are distinct from disease-focused outcomes • Examples: • Pain, fatigue, anxiety, depression • Patient experience/satisfaction • Quality of care, Quality of life Slide courtesy of AHS

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.

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

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

12. Using the Evidence:Initiative Objectives • Create a comprehensive and integrated tri-provincial approach to the collection, analysis, and reporting of PROs • Utilize and leverage existing information technology infrastructure and electronic medical records to facilitate PRO collection while minimizing patient and clinician burden • Facilitate a systematic process for reporting, sharing and utilizing PRO data at the various levels • Facilitate inter and intra-provincial collaboration around quality improvement (QI) initiatives • Create a culture of continual learning through QI that can be evaluated through subsequent PROs Slide courtesy of AHS

13. AIM Enhance Person-Centred Care Tactic Gather PROs and Conduct Focused QI OUTCOME Improve Patient Experience

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

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

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

18. Demographic and clinical characteristics of patients participating in distress screening Slide courtesy of SCA Epidemiology and Performance Measurement Department

19. ESAS scores frequency distribution Slide courtesy of SCA Epidemiology and Performance Measurement Department

20. Distribution of patient responses to CPC Slide courtesy of SCA Epidemiology and Performance Measurement Department

21. Referral status of patients by ESAS symptom for scores between 5 and 10 Slide courtesy of SCA Epidemiology and Performance Measurement Department

22. Frequency distribution of referrals, by clinic site Slide courtesy of SCA Epidemiology and Performance Measurement Department

23. Using the Evidence: S4D Reporting: Inputs & Ideas • What • When • Why • Who • How

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

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

26. Utilizing PROs to drive care at various levels Slide courtesy of AHS

27. Primary PRO Collection • Screening Tool, EQ5D, AOPSS • Secondary PRO collection; specific to QI project Implement Analyze Data • Secondary PRO collection; specific to QI project • Quality Improvement Selection • Select QI/bolster efforts on previous QI Province Specific Indicators • QI specific Evaluation • Additional PROs used by each Province Slide courtesy of AHS

28. Progress to Date:Initiative Timeline • 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 1: Planning and Initiation • March 2014 to December 1, 2014 • Tri-provincial initiative plan • AB charter and implementation plan • 2016 • 2015 • 2014 • 2017 • Phase 2: PRO Collection and Analysis • December 2014 to September 30, 2015 • Establishing and implementing IT approach • Working with early adopters • Phase 4: Evaluation • and Reporting • November 1, 2016 to January 31, 2017 Slide courtesy of AHS

29. Lessons Learned • Strong desire to use evidence to improve patient/family experience • Culture shift to patient reported outcomes from disease focused out comes • Use of technology to gather evidence is welcome once reports generated prove useful • Utilizing existing technology adds to sustainability • Must consider burden to IT as infrastructure is built • Repeated PDSA cycles are required in all quality improvement work • Remain flexible and never stop asking why? – let the evidence speak and inform!