Improving the Outcomes That Matter Most to Patients

Improving the Outcomes That
Matter Most to Patients
̶ Dr. Caleb Stowell and
Dr. Sara Sprinkhuizen

© 2016 Health Catalyst
Proprietary. Feel free to share but we would appreciate a Health Catalyst citation.
Patient Outcome Measurement
Patient-reported outcomes (PROs) and
patient-reported outcome measures (PROMs)
aren’t new to the healthcare industry.
What is new is the pioneering work the
International Consortium for Health
Outcomes Measurement (ICHOM) is
doing to help healthcare organizations
worldwide understand and use PROs and
PROMs to improve patient outcomes.

ICHOM is a research–based, nonprofit
organization with a mission to unlock
the potential of value-based healthcare.
The core of its work is to define and
drive adoption of international standards
on the outcomes—by condition—that
really matter to patients.
CHOM has already identified standard
sets for 13 conditions and is currently
working with innovative providers and
health systems globally to support the
adoption of these standard sets.
Everyone’s talking about value-
based health care, but what
defines value? ICHOM was
founded to answer that question.”
CALEB STOWELL, MD
VP of Standardization and
Business Development

The philosophy behind using PROs and
PROMs is to understand patients’
health from their perspective.
Traditionally, health systems and
clinicians have focused on measuring
concrete clinical outcomes because
they are much easier to measure—
survival is a simple, dichotomous event.
But for most of medicine, the question is no
longer whether someone will survive, but
how their life will be after treatment.”
- Caleb Stowell, MD

In an industry that ranks health
systems according to clinical and
process indicators (e.g., mortality
and infection rates), ICHOM is
proving that healthcare organizations
that collect and measure PROs can
learn and improve, demonstrate
superior outcomes, attract patients,
earn respect, and become leaders
among their peers.

What Are PROs and PROMs?
Patient-Reported Outcome (PRO)
The acronym “PRO” has been an
umbrella term for decades; it’s
included patient satisfaction,
productivity assessments, and
anything else patient reported.
The resulting definition was broad—
too broad to be useful. ICHOM’s
PRO definition is based on Wilson
and Cleary’s work, which divides
PROs into three main categories:
Symptom burden
Functional impact
Health-related quality of life

Patient-Reported Outcome (PRO)
ICHOM reaffirmed this definition
because it is clear and specific and
distinguishes between measures of
patients’ health versus the
experience of their care.
ICHOM Project Leader, Dr. Sara
Sprinkhuizen, has conducted
extensive PROs and PROMs
research and is helping to develop
a framework for global healthcare
data collection and analysis.
Project Leader
An outcome is a result or end state;
anything measuring an intermediate
state isn’t an outcome.”

Patient-Reported Outcome Measure (PROM)
A patient-reported outcome measure (PROM)
is any instrument, scale, or single-item
measure used to assess the PRO concept as
perceived by the patient, obtained by directly
asking the patient to self-report.
PROMs include any method used to collect
patient input, from diaries and event logs, to
one-item or multi-item multi-domain scales.

PROs and PROMs have been used in
healthcare for decades, but primarily in
research settings.
The Medical Outcome Study in the 1970s
measured the impact of care patterns on
outcomes for patients with chronic medical
conditions and depression.
The study used a 116-item survey to assess
quality of life including physical, mental, and
general health.

Since the 1970s, hundreds of PROMs have
been developed across nearly the full breadth
of medicine, but for the most part, their use
has remained narrow.
However, as healthcare consumers become
more interested in understanding and acting
on their own health data, and clinicians
demand analytics to understand the health of
their patient populations, the demand for
PROMs has surged.

Improving Patient Outcomes with PROs and PROMs
PROs and PROMs help healthcare organizations
answer several important questions, including:
1. How is our patient doing today?
2. How can we predict how our patients will
respond to treatments?
3. What has the impact been of our team’s
intervention on our patient’s health over time?

In their simplest form, PROMs are a mechanism
for communicating how patients are actually
doing. As Dr. Stowell explains:
It’s not that clinicians don’t care about patients’
quality of life. They do. They simply don’t ask them
about these things in a structured, reliable way.”
- Caleb Stowell, MD

Dr. Stowell cites the work being done at Stanford
Health Care, which participated in developing,
and is measuring outcomes consistent with, the
ICHOM Standard Set for Low Back Pain:
We did a great film about their care delivery
process with this kind of data in place,
including a patient interview.
I loved the quote from one of their
neurosurgeons…”

As a clinician, when you come in to see the patient you have the
[PROMs] information immediately available.
This benefits the patient by engaging them prior to the consultation.
They are already thinking about the outcomes that matter to them,
and this cue is being provided at exactly the right time.”
John Ratliff, MD, FACS
Spine neurosurgeon

Dr. Ratliff’s patient follows with:
I like that when the doctor enters the room, he
is already familiar with my condition. It makes
me feel more connected to my healthcare.’”

But PROMs can do more than just
communicate; they can also predict a
patient’s health status.
Boston-based Partners HealthCare uses
PROMs data for patients with suspected
coronary artery disease to predict their
likely benefit from coronary intervention.
Such predictive models have helped
Partners avoid costly interventions when
patients don’t stand to benefit.

Most importantly, PROMs can complement
clinical indicators in understanding the quality
of healthcare a team is delivering.
Take prostate cancer for example, in which the
most common treatment, prostatectomy, can
cause high rates of incontinence and erectile
dysfunction after the surgery.
An improvement program that only focuses on
improving blood loss or length of stay misses
a patient’s biggest fears ̶ Will they need to
wear pads for the rest of their life? What about
the relationship with their partner?

Dr. Stowell references the work of the
Martini Klinik (a high volume prostate
cancer center in Germany) featured in
the documentary Measured Outcomes: A
Future View of Value-Based Healthcare:
This is a care team that defines its outcomes
around the patient and works every day to
improve their technique to deliver a better
result. Their rates of incontinence and
erectile dysfunction are now far below
anything previously thought possible.”

Overcoming Barriers to PROs and PROMs Adoption
PROMs are getting industry-wide attention
for their ability to contribute to a more
holistic picture of a patient’s health, but
there are still barriers to adoption – barriers
ICHOM is intent on helping healthcare
organizations overcome.

Overcoming Content Concerns
At a first pass, clinicians can have a hard
time trusting PROMs.
Doctors like measurements that are physiological:
blood pressure, lung function, and blood counts.
PROMs are psychological; they are inherently
subjective. But they have to be that way—how
else can we assess how the patient perceives his
or her illness?”
- Caleb Stowell, MD

According to Dr. Sprinkhuizen, the healthcare
industry tends to underestimate how precise
PROMs tools are, unaware of the science and
methodology that goes into their development.
PROMs should be taken as seriously as any other
medical instrument. They are scientifically and
linguistically validated instruments.”

This is the core of what we are trying to do in the
field: give guidance and support harmonization in
what is, today, a very fragmented approach to
outcomes measurement.”
When faced with a choice between dozens of
tools, health systems’ lack of understanding
about the most appropriate tools for their
targeted outcomes and improvement goals can
stifle their efforts; but selecting the right tool is
essential for PROMs to be clinically interpretable
and actionable. As Dr. Stowell explains:

Choosing the best PROM in a given field is
always the single biggest discussion point in
any Working Group.”
- Dr. Sara Sprinkhuizen
ICHOM develops its recommendations, including
PROM tools, through deep engagement with
expert groups over a nearly year-long process.
ICHOM recommendations are available to the
public and published in academic journals.

Overcoming Operational Concerns
In a field that still utilizes paper questionnaires,
technology gives healthcare organizations a
much better channel for collecting PROs.
Instead of administering a hard copy survey,
clinicians can reach out to patients by sending
a quick email or message.
Dr. Sprinkhuizen believes technological
advancements mean better access—for
patients and providers.

Getting Started with PROs and PROMs: 5 Strategies
Despite the many barriers to PROs and
PROMs adoption, most health systems agree
PROs and PROMs are important.
But getting started can feel like a high hurdle.
Based on ICHOM’s experience working
alongside many healthcare leaders to
measure and improve outcomes, they’ve
identified five strategies for organizations
eager to get started.

Identify clinician champions who
want to know their outcomes and
value transparency.
Many of these champions are
already collecting outcomes data
and under-stand the value in using
PROs and PROMs.
These champions can help
organizations generate momentum
and overcome challenges.
#1: Find the Believers

Sustainable outcomes measurement
depends on the engagement of a broad
range of organizational functions.
Appoint a team leader, define deadlines
for key milestones, and hold the team
accountable for delivering on them.
#2: Organize a Cross-Functional Team

Although outcomes measurement is
critical to long-term success, it’s a
long-term investment that won’t pay
off immediately.
Engage senior leadership to unite
organizational functions and commit
resources in pursuit of the long-term
benefits.
#3: Invest Time and Resources

Outcomes measurement programs take time;
make sure to celebrate progress along the
way to keep stakeholders engaged and
maintain momentum.
#4: Celebrate Progress Along the Way

Clinicians and frontline staff respond to
inspiration from their colleagues, so share
success stories to spur interest throughout
the organization.
ICHOM’s Harvard Business Review
article, What Health Care Leaders Need
to Do to Improve Value for Patients
provides additional information about
these five strategies, including specific
examples of each strategy in action.
#5: Use Early Successes to Scale and Spread

Measure and Deliver Outcomes Patients Care About
Health systems today face a dizzying array of measures;
but how many of those measures are actually useful? If
we aren’t measuring and delivering the outcomes our
patients actually care about, what use is all of our
measurement activity?”
CALEB STOWELL, MD
ICHOM

Measure and Deliver Outcomes Patients Care About
It appears that an increasing number of
organizations are of this same mindset.
For example, the Core Quality Measures
Collaborative—an initiative that bridges public
and private payers—recently stated its
ambition to reduce, refine, and relate quality
measures to focus on “measures that matter.”
“It’s pretty clear that value-based health care is coming.
The question is, do you want to get ahead of it?”
- Caleb Stowell, MD

Learn More about ICHOM’s Outcomes Work
Healthcare leaders interested in
learning more about ICHOM’s work
to define standards, benchmark on
outcomes, and establish outcomes
transparency, can visit the ICHOM
website and read Standardizing
Patient Outcomes Measurement, a
recently published perspective in the
New England Journal of Medicine.

Learn More about ICHOM’s Outcomes Work
For healthcare leaders interested in being
a part of the global value-based care and
outcomes improvement conversation, the
Annual ICHOM Conference brings
together healthcare leaders throughout
the world to discuss the “why” and “how”
of outcomes measurement.

For more information:
“This book is a fantastic piece of work”
– Robert Lindeman MD, FAAP, Chief Physician Quality Officer

More about this topic
Michael Porter and Others Show How to Deliver Better Care in Value-based Healthcare Documentary
Paul Horstmeier, Senior Vice President
Improving Healthcare Outcomes: Keep the Triple Aim in Mind
Michael Barton, Engagement Executive, VP; Tracy Vayo, Director, Knowledge Development
Kathleen Merkley, Clinical Improvement, VP
Patient Engagement And Outcomes Improvement from the Patient’s Perspective
Steve Catmull
6 Steps for Implementing Successful Performance Improvement Initiatives in Healthcare
Bobbi Brown, Financial Engagement, VP; Leslie Falk, Customer Engagement, VP
Quality Data is Essential for Doctors Concerned with Patient Engagement
Dr. Ed Corbett, Deputy CMO
Link to original article for a more in-depth discussion.
Improving the Outcomes That Matter Most to Patients

Caleb joined ICHOM after spending two years as a
research associate and then as a senior health care
researcher with Professor Michael Porter at the Institute
for Strategy and Competitiveness (ISC) at Harvard
Business School. During this time, he contributed to
academic articles, case studies, and presentations
promoting a value-based approach to health care delivery
in the U.S. and abroad. More recently, he served as the
ISC’s primary liaison in launching ICHOM. In November
2012, he joined ICHOM full-time to lead its global
outcome standardization efforts. Caleb received his M.D.
from Harvard Medical School.
Other Clinical Quality Improvement Resources
Click to read additional information at www.healthcatalyst.com
CALEB STOWELL, MD
c.stowell@ichom.org

Project Leader
s.sprinkhuizen@ichom.org
Sara is a Project Leader at ICHOM, where she has led
development of the Stroke and Macular Degeneration
Standard Sets, a large part of which involved researching
patient-reported outcomes measures. Additionally, she has
been involved in developing a framework for global health
care data collection and analysis. Prior to joining ICHOM,
Sara worked as a postdoctoral researcher for Harvard
Medical School and Massachusetts General Hospital in
Boston, developing MRI scanning techniques. Sara holds a
PhD in MRI physics from Utrecht University.
Other Clinical Quality Improvement Resources
Click to read additional information at www.healthcatalyst.com

Improving the Outcomes That Matter Most to Patients

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