patient reported outcome measures encompass quality of life · femida gwadry-sridhar dr. femida...
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Patient Reported Outcome measures encompass Quality of Life
From design to deployment and interpretability Presented by Dr. Femida Gwadry-Sridhar
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Femida Gwadry-Sridhar
➢ Dr. Femida Gwadry-Sridhar is the founder and chief executive officer of Pulse Infoframe
➢ Dr. Gwadry-Sridhar is a pharmacist, epidemiologist and methodologist with over 25 years of experience in clinical trials, health analytics, clinical disease outcomes and registries. Dr. Gwadry-Sridhar was awarded a career scientist award in 2006 from the Canadian Institute of Health Research and through her work founded the first knowledge translation health informatics lab in North America. She is a founding member of the special interest group in medical adherence at the International Society of Pharmacoeconomics and outcomes measurement.
➢ Dr. Gwadry-Sridhar has received over $10 million in peer reviewed funding and actively continues her professional interests in enabling technologies for better provider workflow and patient engagement. She holds her PhD in research methodology and health economics from McMaster University
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Patient Centered Model: Value of Patient Reported Outcomes Measures (PROMs)
Patient Entered Data to Drive:
• Research and clinical trials
• Care improvements & guideline
• Impact assessment of a medical condition and its treatments on a patient’s quality of life and activities of daily living
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What is Health Related Quality Of Life
● Refers to the domain called “health” and add in “life” as
valued aspects of life exist, that are not considered as
“health”, such as income, lack of freedom and factors
that affect health- think of COVID
● Clinicians focus ion HRQoL especially when a patient is
ill or diseased and all aspects of life can become health
related
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• Generic instruments- encompassing a multitude of domains
• Disease specific instruments• Preference based measures
How is HRQoL Measured?
Why do We Care About HRQoL?
Why Measure PROMs?
The Value of PROMs
• It is a good surrogate measure• It helps us evaluate the impact of an
intervention on patients• Forces us to address outcomes in a
quantifiable way • Limited by fact that generic and disease
specific measures are not preference based
How Do We Pick the Instruments?
• Is the instrument reliable? Is it reproducible and can it discriminate between individuals?
• Is the instrument valid? Does it measure what it is supposed to measure?
• Is it responsive? Can it measure changes over time in order to use it for evaluation purposes.
• Helps measure the impact of chronic disease• Helps understand why two patients with the
same clinical criteria have dramatically different responses
• In health care , administrators are keen about measures as they help balance case mix groups
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How Do I Know if a Change is Significant? When Does it Become Meaningful?
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How do we know whether the changes or differences in HRQoL are important?
• Two approaches that are currently used
• The Effect Size: based on psychology ( Cohen) where changes are small , medium or large based on EFS 0.2 , 0.5 or 0.8
• MID approach- Where MID is defined as a small but important difference the patient feels based on patient self-reporting on a global reporting scale
Why are preference based measures important?
• The real question that health care is trying to answer is “ are policies for health care supported by society?”
• Program evaluation is an aggregate number that does not represent individual preferences
• Individual preferences add meaning to aggregate measures
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Why is This Concept Useful?
Ties magnitude
of to tx
decisions
Helps with study
design and
sample size
Emphasizes importance of patient’s perspective
Easily understood by clinicians
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How Do We Tie It All Together?
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Shift in healthcare values
➢ Healthcare beginning to innovate towards more patient-centric model with emphasis on value-based care
➢ Move to value outcomes of care rather than inputs or processes
➢ Patient reported outcomes (PROs) and Patient reported outcomes measures (PROMs) emerge as novel tools to enhance traditional evaluation of patient care and provide additional patient perspective
➢ PROs and PROMs allow patient-driven engagement with their health, treatment regimens, and healthcare providers
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PARENTS / CARERS
Like patients, parents / carers are a great
source for information
ELECTRONIC HEALTH RECORDS
Data can be collected directly from Electronic
Health Records (EHR)
PATIENTS
Patients are a great source as they have
accurate information about their condition
CLINICIANS
Clinicians can provide great knowledge about
a disease and may be a source of data
Where Do We Start Collecting Data?
There are many sources to collect data – it is important to use the correct ones
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Planning what data to collect is
vital – guidance from KOLs can
help ensure that the correct data
fields are selected
PLAN
Decide on the best form of data
capture that suits the needs of
your community – don’t be
afraid to challenge people
BUILD
Once your data set and capture
is built the hard work starts –
you must promote to your
community (both families and
academics)
NURTURE
Plan how you will use the data –
do not just collect it without
working out how it will benefit
your community in the future
UTILISE
Data Needs Help to Grow
Building a data set takes time
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PROM considerations – thinking about what to use and when
Examine three implementations of PROs and PROMs to explore:
➢ The nature and uses of patient reported outcomes, experience and satisfaction
➢ Opportunities for PROMs to directly impact patient care and contribute to system-level benchmarking
➢ Benefits and challenges in moving from paper to electronic PROM administration, and integration approaches in the face of varied information management technology
➢ Best practices for PRO and PROM integration into clinical workflow still being appraised
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One example: National Health System
➢ Works with clinicians, consumers and managers to design and promote better healthcare in a state in Australia
➢ Patient reported outcomes measures (PROMs) are central to any state or Countries Integrated Health Care and Leading Better Value Healthcare Strategies
➢ Track PROMs in clinical settings with patient facing portals
➢ Patients empowered to monitor their own outcomes
➢ Clinicians can view aggregate and individual outcomes – allows understanding of patient’s quality of life within larger context of their peers
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Patient view- interpretation
Patient Engagement
Providing Patients with insights into how they are doing today and trend over time.
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Clinician view
Analytics • PROMs results including actual scores and change overtime.
• Reports can be queried based on cohorts/demographics and include lab values, staging etc.
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Clinician viewCollaboration
Portals Regulatory
Data
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Canadian Melanoma Research Network & RWE
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How to distribute the PROMS, electronic or paper
➢ GMRN provides option to fill out PROM on paper in clinic (or mailed in) or online through scheduled e-mail reminders
➢ Scheduled online questionnaires allow more consistency in time elapsed between consecutive questionnaires
➢ Older patients prefer paper option
➢ Some patients opt in for paper PROM to minimize disease-related activities once they leave the clinic
➢ Mental baggage, depressing to complete
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COVID – 19 – Role of PROMS
Organisations with a PROMS platform and patient portal can flexibly and rapidly engage with patients and staff:
➢ Diagnosis: patients can check in report symptoms, receive automated feedback and advice on next steps. Health workers and quarantainees able to report on their status.
➢ Monitoring of cases in home care: advice on when to escalate, "red flags" to initiate telehealth consultations, reassurance for mild cases, monitoring of compliance with isolation
➢ Supporting through recognition of social isolation, anxiety and depression linked with tailored advice and links to online information and services
➢ Follow-up of respiratory disease and mental health sequelae long term
➢ For each stage data collected in real time to inform response
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healthieTM
Patient Portal Demo
➢ https://youtu.be/VXDS0mAOx2U
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Thank you!