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Patient Reported Outcomes to Accelerate Change
Leanne Wells (@LeanneWell63)
Sam Vaillancourt (@VaillancourtSam)
Paresh Dawda (@pareshdawda)
Session Outline
Healthcare systems are 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
Tomorrow’s health care systems
Consumer transformation
Healthcare delivery
transformation
Clinical transformation
Commercial transformation
Pace of change
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
Patient reported
measuresSatisfaction surveys Satisfaction
PREM Experience of care
Patient reported
measuresSatisfaction surveys Satisfaction
PREM Experience of care
PROM
Symptoms
Functional status
Health-related quality of life
Other related care outcomes
PROMs and PREMs
PROMs and PREMs
What matters to them?• 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
What matters to them?
• Make life easier, 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
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
Benefits of patient narratives
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
‘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
Towards an analysis framework
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
REAL PEOPLE, REAL DATA
Using patient stories to shape, design and improve care
Exercise
• Spend 3-4 minutes speak to your neighbourabout 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?
Feedback
Development
Evaluation
Piloting
4 sites/services
Literature Review
Patient stories Analysis
The process
Capture the narrative
Stages of life journey/health
process
Analysis to define themes
Diagnosed with breast
cancer.
• Quick access
• Results delayed
• Treatment options
• Surgery
• breast cancer on other
side
• Second surgery;
dishcharge issues
• Chemotherapy
• Tolerated well
• Side effects but managed
& were explained
• Infected line - sepsis
• Relapse
• Quick access, again
delayed
results/treatment plan
• Moved areas
• New specialist
• Chemotherapy;
tolerated well but left
her weaker
• Spread to further LN; local skin
involvement
• Radiotherapy/Chemotherapy –
weakness; long waits
• needs more help self care; my father now
finding it difficult to coordinate
• 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.
Prevention
Change in health
Seeking assistance
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
Analysis
The Health Experience Wheel
• A major strength (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.
Practical Application
• “To me 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”
Applicability
• To determine whether 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
https://expwheel.chf.org.au
http://ourhealth.org.au
PROM
Data that
speaks for patientsSamuel Vaillancourt
Emergency physician | Associate ScientistSt. Michael’s HospitalUniversity of Toronto
1. What are Patient reported Measures (PROMs)
2. The Science of PROM
3. PROM-ED for Emergency Department care
Outline
Our shared purpose?
• Satisfaction
• Experience
• Outcome
-1-
What are Patient reported
Measures (PROMs)
Patient-Reported
Outcome Measures
• Not actually outcome
• Well developed in clinical trials. 25% of US drug
labels include patient reported outcome.
• Rapid growth in routine care
–Avedis Donabedian
“Outcomes remain the 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),
Types of PROMs
• Generic e.g. SF-36 EQ-5D
• Health-related quality of life
• Specific e.g. Oxford Hip
• Condition
• Anatomy
• Care setting
-2-
The Science of
PROMs
National Quality Forum. Patient Reported Outcomes (PROs) in Performance Measurement. Washington, DC:
National Quality Forum; 2013
Concepte.g. Person with clinical
depression
PRO
patient-reported outcomeFeeling depressed
PROM
patient-reported outcome
measure
PHQ-9
PRO-PM
patient-reported outcome
performance measure
% patients score > 9
by 3 weeks
Potential
• Tracking outcomes
• Assessing symptom severity
• Assisting treatment decision or interventions
• Monitoring general health
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
PerformanceMeasure
National Quality Forum. Patient Reported Outcomes (PROs) in Performance Measurement.
Washington, DC: National Quality Forum; 2013
Define PRO
Define Target Measurement Need
1.Concept: _______________
2.Population: _____________
3.Purpose: ☐ one point in time ☐ change over time ☐ predicting future state
Defining PRO
• Review of the literature
• Expert opinion
• Patient interviews
• Patient focus groups
Conceptual framework
PRO
Depression
Physical
Functioning
Social
Functioning
Psychological
functioning
Employment
Friends and family
Exercising
concentration
mood
-3-
PROM-ED for
Emergency
Department care
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?
Methods
• Patients recruited at their ED visit
• Purposeful sampling
• 45 In-depth interviews 3 to 9 days after ED care
Figure 2. Conceptual Model of Patients Conception of ED Care Outcomes
Patient-re
ported
outc
om
e o
f ED c
are
Understanding
Explanation for symptoms (diagnosis)
Implications
Expected trajectory(prognosis)
Worry& Distress
Reassurance
Fear alleviated
Feeling of control
SymptomRelief
Direct suffering
Impact on function
Having a Plan
How to resolve issue
How to improve symptoms
How to continue diagnosis
Key Points
• Patient reported 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
Adaptive change
“Technical changes are 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
Contact details
• Leanne Wells
• Sam Vaillancourt
• Paresh Dawda
