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


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


• 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?


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


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


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


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

https://youtu.be/VXDS0mAOx2U

https://youtu.be/VXDS0mAOx2U


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Thank you!

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