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Patient Reported Outcomes to Accelerate Change
The document discusses the development and importance of patient-reported outcome measures (PROMs) in healthcare systems, emphasizing their role in improving patient care quality and engaging patients in their health narratives. It highlights the use of the 'real people, real data' tool to capture comprehensive patient experiences and facilitate better outcomes through understanding individual health journeys. The session outlined includes insights from various experts on the use of PROMs, patient engagement, and strategies for healthcare transformation focused on delivering value to patients.
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Patient Reported Outcomes to Accelerate Change
- 1. Patient Reported Outcomesto Accelerate Change Leanne Wells (@LeanneWell63) Sam Vaillancourt (@VaillancourtSam) Paresh Dawda (@pareshdawda)
- 2. Session Outline Healthcare systemsare striving to achieve value and patient-reported outcome measures (PROMs) hold the promise of focusing quality improvement on what matters most to patients. Speakers will share the rich experience of developing PROMs for outpatient emergency care in Canada with the Australia experience of using a powerful tool, ‘real people, real data’, designed to capture people’s stories about their ‘whole of life’ and ‘whole of system’ experiences of health, healthcare and health outcomes. • Discuss in which circumstances patient-reported outcomes may be useful and the process of developing reliable and valid PROMs • Understand the use of the ‘real people, real data’ tool to define the patient’s perspective, outcomes and value. • Introduction and overview – Leanne and Sam • The case for patient engagement and narratives – Leanne • Real People Real Data – a toolkit – Paresh • PROM in ED – Sam • Key Points – Leanne
- 3. Tomorrow’s health caresystems Consumer transformation Healthcare delivery transformation Clinical transformation Commercial transformation Pace of change
- 4. What is value? •Quadruple aims – Better health outcomes – Better experience of care – Better value – Better supported workforce • Patients as partners in care • Consumers as co-creators of value
- 5. Patient reported measures Satisfaction surveysSatisfaction PREM Experience of care
- 6. Patient reported measures Satisfaction surveysSatisfaction PREM Experience of care PROM Symptoms Functional status Health-related quality of life Other related care outcomes
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- 9. What matters tothem? • A fragmented system and providers working in isolation not as a team • Uncoordinated care • Difficulty finding services • Service duplication, absent or delayed services • Low uptake of eHealth and other health technology • Access problems due to cost, transport, language, mobility and remoteness • Feelings of disempowerment
- 10. What matters tothem?
- 11. • Make lifeeasier, more convenient for ME • Let ME take ownership • Empower ME • Include and respect ME in the relationship • Keep ME informed • Enable transparent access to MY info • Give ME the best care you can • Reduce MY costs
- 12. Patient narrative benefits •Overcome limitations of traditional methods • Whole of life and system insights • Patient life journey approach: track a person’s ideal health pathway • What happens versus why • Quality and safety compliance + innovation • Effective self management of health • Overcome risk-averse cultures Ref: Literature and Practice Review. https://www.chf.org.au/real-people-real-data- keydocs.php
- 13. Benefits of patientnarratives Consumer •cathartic •affirming •empowering Health services •tool for consumer centeredness •assist with regulatory compliance •move from compliance to commitment in improving outcomes System •equity •system performance •whole of life •response to emotional experience •answer why •refocus resource allocation
- 14. ‘Seven Benefits’ framework •Richer insight • Potential solutions • Changing relationships • Individual benefits • Better quality decisions • Changing practice • Benefits beyond the project David Gilbert, inhealth associates, UK, Futurepatients blog, 2015
- 15. Towards an analysisframework individual health experiences expectations Family/home situation and support Work/employment; social inclusion, community activities Medical health professionals Medical procedures, treatments/devices, medications Medical & health services Health system policy & funding; social determinants
- 16. REAL PEOPLE, REALDATA Using patient stories to shape, design and improve care
- 17. Exercise • Spend 3-4minutes speak to your neighbour about a story in relation to healthcare experienced by you or a family member or a friend. • Think about: – How would you describe the relationship between the different services/professionals that treat your condition? Who makes decisions about your care and treatment? – Did you know what to expect before you had the treatment/procedure? Were there any surprises? – Is there anything that’s worked especially well in the care you’ve received? Is there anything that hasn’t worked well?
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- 20. The process Capture the narrative Stagesof life journey/health process Analysis to define themes
- 23. Diagnosed with breast cancer. •Quick access • Results delayed • Treatment options
- 24. • Surgery • breastcancer on other side • Second surgery; dishcharge issues
- 25. • Chemotherapy • Toleratedwell • Side effects but managed & were explained • Infected line - sepsis
- 26. • Relapse • Quickaccess, again delayed results/treatment plan • Moved areas
- 27. • New specialist •Chemotherapy; tolerated well but left her weaker
- 28. • Spread tofurther LN; local skin involvement • Radiotherapy/Chemotherapy – weakness; long waits • needs more help self care; my father now finding it difficult to coordinate
- 29. • Further radiotherapy& chemo • Pneumonia (PCP) admission – serious • Very frail • Comes home; falls; admitted. Liver involvement, transferred to hospice and dies a few days later on her 71 birthday.
- 30. Prevention Change in health Seekingassistance Diagnosis Treatment Living with a health issue Recovery End of life Access, equity and affordability Information and understanding Informed consent (including informed financial consent) Appropriate care Respectful care Whole of person care Coordinated care and supported transitions Safety & quality Control & choice Social, economic and community participation Carers & support Stage of life journey Analysis to define theme
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- 33. • A majorstrength (or value-add) of the RPRD tool is the consumer story wheel. This story wheel for presenting the consumer narrative is the first of its kind in the world.
- 34. Practical Application • “Tome it just seemed really rigorous, really robust, and importantly doing justice to a story. But it’s not just you telling me some casual story and then me telling the decision makers. It’s actually presented as something that fits into their evidence based process” • “You don’t need many of those to get a picture, what the key issues are in the organisation or in a service. Because they are so powerful in terms of how they communicate the issues”
- 35. Applicability • To determinewhether to introduce new blood test or not • Alzheimer's Australia (http://ihic.improve.org.au/wp- content/uploads/2015/11/C3_BENNETT.pdf) • Healthcare Consumers Association • Healthcare Services • Boards • Frontline
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- 37. PROM Data that speaks forpatients Samuel Vaillancourt Emergency physician | Associate Scientist St. Michael’s Hospital University of Toronto
- 38. 1. What arePatient reported Measures (PROMs) 2. The Science of PROM 3. PROM-ED for Emergency Department care Outline
- 39. Our shared purpose? •Satisfaction • Experience • Outcome
- 40. -1- What are Patientreported Measures (PROMs)
- 41. Patient-Reported Outcome Measures • Notactually outcome • Well developed in clinical trials. 25% of US drug labels include patient reported outcome. • Rapid growth in routine care
- 42. –Avedis Donabedian “Outcomes remainthe ultimate validators of the effectiveness and quality of medical care.” Donabedian, A. (1966). Evaluating the quality of medical care. The Milbank Memorial Fund Quarterly, 44(3),
- 44. Types of PROMs •Generic e.g. SF-36 EQ-5D • Health-related quality of life • Specific e.g. Oxford Hip • Condition • Anatomy • Care setting
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- 46. National Quality Forum.Patient Reported Outcomes (PROs) in Performance Measurement. Washington, DC: National Quality Forum; 2013 Concept e.g. Person with clinical depression PRO patient-reported outcome Feeling depressed PROM patient-reported outcome measure PHQ-9 PRO-PM patient-reported outcome performance measure % patients score > 9 by 3 weeks
- 47. Potential • Tracking outcomes •Assessing symptom severity • Assisting treatment decision or interventions • Monitoring general health
- 48. Using patient reported outcomes •Identify issue and population of interest • Identify domains of importance to patients 1. Patient Reported Outcome • Identify existing PROMs • Test for reliability, validity, responsiveness • Test feasibility of use 2. Patient Reported Outcome Measure • Aggregate PROM data, benchmark • Evaluate threats to validity. E.g. exclusions, missing data, poor response rate 3. Patient Reported Outcome Performance Measure National Quality Forum. Patient Reported Outcomes (PROs) in Performance Measurement. Washington, DC: National Quality Forum; 2013
- 49. Define PRO Define TargetMeasurement Need 1.Concept: _______________ 2.Population: _____________ 3.Purpose: ☐ one point in time ☐ change over time ☐ predicting future state
- 50. Defining PRO • Reviewof the literature • Expert opinion • Patient interviews • Patient focus groups
- 51. Conceptual framework PRO Depression Physical Functioning Social Functioning Psychological functioning Employment Friends andfamily Exercising concentration mood
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- 62. Exercise At your table,share an instance when you or a relative sought care in an Emergency department 1. What were you trying to achieve through ED care? 2. What was important about your experience? 3. Are these two similar or different?
- 63. Methods • Patients recruitedat their ED visit • Purposeful sampling • 45 In-depth interviews 3 to 9 days after ED care
- 64. Figure 2. ConceptualModel of Patients Conception of ED Care Outcomes Patient-reported outcomeofEDcare Understanding Explanationforsymptoms(diagnosis) Implications Expectedtrajectory(prognosis) Worry&Distress Reassurance Fear alleviated Feeling of control SymptomRelief Direct suffering Impactonfunction Having aPlan Howtoresolveissue Howtoimprovesymptoms Howtocontinuediagnosis
- 65. Key Points • Patientreported information regarding experience and outcome is essential. • These should take many forms, from narratives to data. • Doing it right requires critical deliberate development involving several stakeholders. • Enabler for improvement
- 66. Adaptive change “Technical changesare those with well defined problems, where a clear solution can be found and the implementation path is clear... Adaptive changes are characterised by situations where the challenge is complex and to solve it requires transforming long-standing habits ….new ways of thinking and relationships….The development of new models of care and many challenges the local systems are being asked to plan for are in the domain of adaptive change….” Nigel Edwards, , 11 March 2016
- 67. Contact details • LeanneWells – L.Wells@chf.org.au • Sam Vaillancourt – sam.vaillancourt@utoronto.ca • Paresh Dawda – dr.paresh.dawda@gmail.com