The Power of The Patient Voice

The Power of the Patient Voice
How Health Care Organizations Empower

Patients and Improve Care Delivery
THE POWER OF THE PATIENT VOICE: How Health Care Organizations Empower Patients and Improve Care Delivery
For the past few years, patient-centered care has been an intense focus of health care leaders as well as a
byword for excellence in care delivery. Yet patients still have little influence in matters that impact them
the most. The jury is still out on how to rethink care in a way that amplifies the voice of the patient.
In this eBook, The Power of the Patient Voice, we examine how leading health care organizations have given patients a
more prominent voice, so they can take greater responsibility and be more accountable for their own care. We use data
gathered throughout the past year from NEJM Catalyst Insights Council surveys and one-on-one interviews with Insights
Council members to illustrate the need for health care professionals and health systems overall to listen more intently to
patients in order to strengthen engagement and adherence to care plans.
Insights Council members – a qualified group of executives, clinical leaders, and clinicians directly involved in health
care delivery – share firsthand their challenges and experiences in evolving care delivery to empower patients.
They discuss how their organizations are:
• moving away from fee-for-service models to empower the patient voice;
• integrating social determinants of health and patient values into care plans;
• improving collaboration, including care team documentation, to carry the patient voice
through the continuum of care;
• adapting health care access to align with patient needs; and
• updating medical training to include the importance of patient empowerment.
Throughout this eBook, Insights Council members share their experiences, ideas,
and best practices to help you improve care delivery in your own organization by
hearing the patient voice more clearly.
catalyst.nejm.org 1
Defining the patient voice
Patients are said to be the center of health care Patient-reported outcome measures, or PROMs,
but too often their voices are ignored or put to are an example of how to institutionalize the
the side when decisions are being made – concept of patient voice as the validated
decisions about their health, their treatment questionnaires enable patients to report back
plans, the cost of their care, and more. Care that about their own symptoms and functions.
KATE NIEHAUS, MBA is patient-centric can still be lacking if gaining
In a survey on the topic, 60% of NEJM Catalyst
Patient Advocate for the Patient input from patients themselves is not an integral
Insights Council members say the top reason to
Family Advisory Council for part of the process.
collect and use PROMs is to improve the patient
Quality at Memorial Sloan
“The patient voice adds a different perspective to experience. Yet, only 38% of respondents say their
Kettering Cancer Center
everything that goes on in health care and can organization currently uses a PROMs system.
60%
“The patient voice adds a point out real gaps in the system,” especially
38%
different perspective to systems that are physician-focused, says Kate
Niehaus, MBA, patient advocate for the Patient
everything that goes on in
Family Advisory Council for Quality at Memorial
health care and can point out Sloan Kettering Cancer Center in New York.
real gaps in the system.”
Amplifying the patient voice requires buy-in from
the entire organization. “This can’t just be a one-
60% of NEJM Catalyst Insights Council
off effort. If the patient voice is not embedded in
members say the top reason to collect
your organization’s processes and systems, then
and use PROMs is to improve the
real change won’t happen,” says Mary O’Connor,
patient experience. Yet, only 38% of
MD, Professor of Orthopedics and Rehabilitation
respondents say their organization
at Yale School of Medicine in New Haven, currently uses a PROMs system.
Connecticut.
catalyst.nejm.org 2
Making the patient voice a centerpiece of the organization’s business model can sometimes result in a power
shift. “Medicine is designed to hold onto patients and we have often inadvertently trained them to be
dependent on us,” says Calum A. MacRae, MD, PhD, Vice Chair for Scientific Innovation in the Department of
Medicine at Brigham and Women’s Hospital and Professor at Harvard Medical School. “Part of the reason the
patient doesn’t have a voice is because we tend to medicalize and consequently take over everything around
certain activities while blaming patients for poor outcomes.”
MacRae attributes this dysfunctional dynamic to liability. “Liability has driven the situation where all of the
activities which are not fully described in protocols become the clinician’s responsibility,” he says. Everything
from calling a patient to convey a test result to offering referrals for other health care services such as a physical
CALUM A. MACRAE, MD, PHD
therapy or nutrition have to go through a physician because of medicolegal and billing constraints, he points
Vice Chair of Scientific Innovation
out. The solution, in his opinion, lies “in systematically transferring more power and responsibility to patients,
for the Department of Medicine
thereby providing them with a louder voice.”
at Brigham and Women’s Hospital
and Associate Professor at Harvard
Medical School
“Medicine is designed to hold

onto patients and we have
often inadvertently trained
them to be dependent on us.”
catalyst.nejm.org 3
How payment models can mute the patient voice
When The Villages Health was launched in Florida half hour,” which Lowenkron says gives patients ample
nine years ago, the health system’s leaders wanted to opportunity to share their stories and health concerns
overcome a common obstacle to hearing the patient and physicians better ability to connect with them.
voice: the financial reward for keeping visits short.
While a volume-based model suggests that if patients do
“We had to figure out how to stay viable and generate poorly, health systems may do better because they run
JEFFREY LOWENKRON, MD, MPP
enough revenue to keep the lights on and staff paid more tests, a full-risk model aligns outcomes with
CMO at The Villages Health
while still spending enough time to really get to know compensation so if patients do poorly, the health system
“We had to figure out how to our patients,” says Chief Medical Officer Jeffrey also does poorly. This moves care delivery from “no
Lowenkron, MD, MPP. Leadership wanted to avoid the money, no mission” to “no outcome, no income,”
stay viable and generate
trap of the dreaded 15-minute visit, “which just does Lowenkron says.
enough revenue to keep the
not align well with the patient voice concept.”
lights on and staff paid while
Managing a largely elderly population that often has
still spending enough time to
multiple chronic conditions is made more difficult by
really get to know our the traditional reimbursement model, “which drives
patients.” fragmented care and loses the patient voice,”
Lowenkron says. For example, under fee-for-service,
while a primary care physician wouldn’t get paid to
treat multiple problems during a visit, the multiple
specialists he might refer the patient to would get paid.
The Villages Health settled on a primary-care-driven,

patient-centered, community-based care model that
allows time to be spent with patients and aligns
with improved care outcomes of the population as a
whole. With this model, “patients we don’t know get
an hour with a PCP and patients we do know get a
catalyst.nejm.org 4
Renée Crichlow, MD, FAAFP, Director of

Advocacy and Policy and Assistant Professor
at University of Minnesota School of Medicine
and Community Health in Minneapolis,
believes “there is a deep desire in health care
right now to have the patient’s voice, if
possible, be central to care conversations.”
56%
However, she also has found the patient voice
“drowned out” by money interests.
RENÉE CRICHLOW, MD, FAAFP
“At some organizations, patients are treated
Director of Advocacy and Policy and
like customers in that there is profit to be
Assistant Professor at University of
made,” she says. “When it’s just the physician
Minnesota School of Medicine and
and patient – when the patient is the center
Community Health
of the discussion, not RVUs – we can work
“When it’s just the physician together to figure out what’s effective,
and patient – when the patient efficient, and appropriate.”
is the center of the discussion, Crichlow believes universal access could be a Insights Council members
not RVUs – we can work cost-effective and clinically effective way to surveyed on the topic of
alleviate some of the industry’s financial Medicare for All, a form
together to figure out what’s
pressures. Insights Council members of universal coverage,
effective, efficient, and say cost, quality, equity,
surveyed on the topic of Medicare for All, a
appropriate.” form of universal coverage, say cost, quality, and access to care would
improve with Medicare
equity, and access to care would improve
for All, but 44% say the
with Medicare for All, but 44% say the
patient experience would
patient experience would worsen.
worsen.
catalyst.nejm.org 5
The power of integrating social determinants

of health and patient values into patient care
When Crichlow practiced medicine in a rural Montana Understanding a patient’s social determinants of
town, one of her patients, a farmer, required health also can be instrumental in avoiding
hospitalization for a critical condition. She arranged for unnecessary readmissions, according to Jonathan
him to be admitted but he refused, telling her, ‘If I go to David, MSN, RN, CCRP, NE-BC, Cardiac Rehab Nurse
JONATHAN DAVID, MSN, RN,
the hospital, we will lose our farm.’ Crichlow told him Coordinator for Inpatient Cardiac Rehab at Stanford
CCRP, NE-BC that she didn’t know how to care for him outside of the Health Care. “Sometimes our systems can be so
Cardiac Rehab Nurse Coordinator hospital, but the farmer proposed that he would come complex and fast-paced that we don’t take the
for Inpatient Cardiac Rehab at to the outpatient clinic every day and he kept his word. time to pause and understand our patient enough.
Stanford Health Care
[Yet] there lies the opportunity to learn barriers to
“For me, that was a real eye opener to understanding a
“Sometimes our systems can be following provider recommendations and reduce
patient’s needs and values, and being prepared to alter
readmissions,” he says.
so complex and fast-paced that care plans accordingly,” says Crichlow, who today cares
we don’t take the time to pause for low-income populations. “You can’t make
assumptions about what a patient’s resources are or
100%
and understand our patient
the care they are capable of adhering to – you have to
enough. [Yet] there lies the listen and meet them where they are.” Nearly
opportunity to learn barriers to of Insights Council
Many organizations have started to dig into patients’
following provider members believe in the
social determinants of health such as health literacy
importance of using
recommendations and reduce and socioeconomic status to understand what might social determinants of
readmissions.” prevent them from showing up for follow-up visits, health in patient care and
understanding how to manage their disease, or they consider the top two
adhering to care plans. Nearly 100% of Insights Council benefits to be improving
members believe in the importance of using social patient experience or
determinants of health in patient care and they satisfaction.
consider the top two benefits to be improving
patient experience or satisfaction.
catalyst.nejm.org 6
While 86% of Insights Council members say the patient mother’s point of view and that she would not be a
has some degree of responsibility for avoiding good candidate for rehab. “If I hadn’t put the clinical
unnecessary readmissions, trying to predict who might decision-making within the context of her psychosocial
be at high risk for being readmitted based on their social environment, I would have come up with a different
determinants of health is the care team’s responsibility, recommendation. Instead I amplified her voice above
according to David. all others,” she says.
86%
For example, if an inpatient with a sternal incision has
poor mobility and lives on the second floor of a motel
While of Insights
with no elevators, the care team, as part of the
MARY O’CONNOR, MD Council members say the patient
discharge process, would advocate to seek living
Professor of Orthopedics and has some degree of responsibility
arrangements in a single-story shelter. That way, the
Rehabilitation at Yale School of for avoiding unnecessary
patient wouldn’t have to walk upstairs and risk the readmissions, trying to predict
Medicine
integrity of surgical incision. “Patients aren’t always who might be at high risk for
“If I hadn’t put the clinical going to offer that information up, so you have to ask being readmitted based on their
the right questions,” David says. social determinants of health is
decision-making within the
the care team’s responsibility.
context of her psychosocial O’Connor agrees, but sometimes that means overruling
other caregivers such as family members. An elderly
environment, I would have
patient and her children recently came to O’Connor’s
come up with a different
office for a consultation about a knee replacement to
recommendation. Instead I resolve her arthritis. Her children thought the
amplified her voice above all operation might help their wheelchair-bound mother
others.” walk again. In talking to the patient, O’Connor learned
her values – and that she didn’t want to go through
rehab and was happy having people in her retirement
community push her around in her wheelchair –
she only agreed to the consultation to appease her
children. O’Connor did not recommend the operation,
instead explaining to the patient’s children their
catalyst.nejm.org 7
If a health care professional is going to ask about social

determinants of health, they have to be able to back it up with
resources, according Jonathon Firnhaber, MD, MAEd, MBA,
Residency Program Director, Vice Chair of Academic Affairs,
and Associate Professor for the Department of Family
Medicine at the Brody School of Medicine at East Carolina
University. For instance, if a physician asks a patient about
food insecurity and they admit to it, the physician should have
information about a food pantry or grocery cards ready as a
JONATHON FIRNHABER, next step. “You might want to ask the question and be
MD, MAED, MBA comfortable asking the question, but if you don’t have the
Residency Program Director, resources, you can’t. That’s where the difficulty often lies,”
Vice Chair of Academic Affairs, he says.
and Associate Professor for the
Austin T. Welsh, MD, Geriatrician at Partners in Primary Care
Department of Family Medicine
in Raytown, Missouri, says he dives into patients’ social needs
at the Brody School of Medicine
at East Carolina University intentionally now, after doing so haphazardly for years. “I used
to step into issues accidentally and it would be like stepping
“If a health care professional on a land mine. Now I go looking for the land mines,” he says.
The difference is he now devotes more time to each visit and
is going to ask about social
has a comprehensive care team, including a social worker, at
determinants of health, they
the ready to deal with whatever comes to light. For instance,
have to be able to back it up an elderly patient recently came to see him complaining of
with resources.” repeated falls. After seeing her walk during the exam, he asked
if she consumed alcohol and found out she drank often to
cope with being raped at age 12. “I didn’t find that out until an
hour in. If I didn’t have the practice I do, I would have never
gotten to that – to her voice – or have been able to help her
with trauma therapy,” he says.
catalyst.nejm.org 8
How pain can impact the patient voice
“Pain is a great example of Pain is a multifactorial issue for patients and providers adverse consequences for patients with pain but a
how we have overmedicalized alike. Treatment begins with listening to the patient. majority, 59%, agree that the benefits of limiting opioids
in care delivery outweigh adverse consequences for
and also not listened to the “Pain is a great example of how we have
patients with pain.
patient voice.” overmedicalized and also not listened to the patient
voice,” MacRae says. “Simple things like using a scale “People just want to feel like they can function and it is
CALUM A. MACRAE, MD, PHD to describe pain are miscued and don’t represent the so important to critically listen to them in that moment,”
overall impact of pain on their life. This is a more Crichlow says, adding that her practice uses a
complex problem that demands a more inclusive multifactorial approach to chronic pain, calling on an
approach to understand what pain means in each in-house behavioral health expert as needed.
patient’s life.”
NEJM Catalyst Insights Council members seem to

agree, with only 58% of survey respondents saying
59% of Council members agree that the benefits
their organization’s management of patients’ pain of limiting opioids in care delivery outweigh adverse
is sufficient. consequences for patients with pain.
Firnhaber says the medical profession has allowed

patients to assume that they should be able to live
completely pain free. “Once you’ve squirted that
toothpaste out, how do you put it back in the tube?
You can’t,” he says, adding it is difficult to convince
patients that they might have to live with some
discomfort to avoid addiction. “And we can’t just say
we no longer value your opinion about your own pain.”
Council members are split (36% say yes and 36% say
no) on whether opioid reduction efforts led to
catalyst.nejm.org 9
Documenting the patient voice
It’s one thing to get a patient to open up about their

social determinants of health, their health goals, and
their values; it’s another to document that information
so that the patient doesn’t have to repeat it all along
the care continuum.
AUSTIN T. WELSH, MD
“Those discussions about social determinants of health
Geriatrician at Partners in
have an incredible amount of gravity,” Firnhaber says. If
Primary Care
they aren’t documented properly and patients have to
“How can I make a note [that keep relaying their story, “the message back to the
everyone down the line can patient is ‘you bared your soul, and no one cares.’”
access] when there are 10 But Welsh says the reality is more difficult. “How can I
different EHRs in one town?” make a note [that everyone down the line can access]
he says. “The American health when there are 10 different EHRs in one town?” he
says. “The American health system gets an F for that.
system gets an F for that.
Electronic records are making doctor’s lives difficult
Electronic records are making
and hurting patient care.”
doctor’s lives difficult and
Niehaus says Memorial Sloan Kettering has a “patient Although Yale University has a program called
hurting patient care.”
values” tab in the EMR that acts as a repository for all “PatientWisdom,” which integrates with the Epic EMR
the things that are important to a patient, including and tracks patient goals, priorities, and barriers to staying
how they want to be cared for at end of life. “It’s hard healthy, O’Connor says it is not universally available for
to get busy doctors to look at that tab, especially since all the settings in which she practices. Standardizing the
it doesn’t have clinical information about the patient,” application would save time because everyone wouldn’t
she says. have to ask patients the same questions.
catalyst.nejm.org 10
“We are on the verge of being Information gathered from patients helps fuel opinion, should be treated more like the rest of our
able to use our cell phone apps applications driven by artificial intelligence and machine lives and have patients join in the redesign of the
learning to spot trends and patterns. While only around system, including the tools they would be willing to
[with AI] to augment patient
a quarter of Insights Council members say their use to share information, even when they are
exams.” organizations make use of artificial intelligence/ healthy. “Why do we wait until patients are sick to
AUSTIN T. WELSH, MD
machine learning, nearly half have experienced a net listen to them?” Boosting patients’ voices means
improvement in patient health as a result. giving them ways to be heard outside of the four
walls of the health system.
In cardiology, AI, fueled by patient-reported outcomes
and clinical data, is used to help patients understand the
status and likely progression of their disease. “We can
share proven predictive models that show the next
three years of disease progression as well as how certain
interventions and lifestyle changes will help them move
up on their health curve,” David says.
“We are on the verge of being able to use our cell phone
apps [with AI] to augment patient exams,” Welsh says,
pointing to retina scans, hearing tests, and breathing
checks for COPD or asthma as applications for AI. “A
patient could read a standard passage and the app
would pick up on irregularities in breathing.” AI also will
be able to detect patterns in labs, patient histories, and
more to prompt physicians to ask questions or
remember certain diagnostics.
MacRae says that patients should be empowered to

provide their health data in meaningful ways outside of
a clinic visit or transaction. “It is bizarre that we try to
force so much of what we do into particular venues and
particular models of care,” he says. Health care, in his
Educating next-generation medical professionals about the patient voice
“In terms of hierarchy, a “Medical students should be trained in the importance

medical student is not very of the patient voice,” O’Connor says. Unfortunately, only
56% of Insights Council members believe that the
likely to say to their attending
education and training medical students receive in
physician, ‘We should ask the medical school is preparing them for the reality of
patient what her preferences health care.
and values are.’ That has to
Crichlow says students need to learn that patients can’t
be a culture change from heal unless their physicians know what healing means
the top.” to them: “Patients need to know someone is listening
to their story.”
MARY O’CONNOR, MD
In David’s opinion, medical and nursing school curricula
need more emphasis on patient-centered care. For
instance, an evidence-based treatment plan might
seem appropriate but if the patient’s values or
socioeconomic situation don’t support it, then it
won’t be adhered to, he says.
56%
In the end, medical students are going to do what the
faculty tells them to do, according to O’Connor. “In
terms of hierarchy, a medical student is not very likely
Only of Insights Council members
to say to their attending physician, ‘We should ask the
believe that the education and training
patient what her preferences and values are.’ That has medical students receive in medical school is
to be a culture change from the top,” she says. preparing them for the reality of health care.
How COVID-19 changed access and the patient voice
“We resisted the use of virtual COVID-19 has altered the trajectory of the patient voice Another way to help empower patients – outside of
care for the better part of a in a positive way, according to Insights Council members. telemedicine – is to make their access to services a
much smoother process. Before discharge, Cardiac
decade and yet we were able Patients decided early on in this pandemic that it was
Rehab inpatients are given the referrals they need
as an industry to pivot to going to be too risky to come into health care settings for
and team members work to secure follow-up
non-COVID care and “that decision was in conflict with
deliver nearly 100% virtual care appointments for them, according to David. “We
fee-for-service care delivery systems, [which] needed
in only a few days when it need to have a system that ensures patients get a
patients to consume their services,” Lowenkron says.
suited us.” follow-up appointment before discharge so they can
The result was the rapid adoption of telemedicine, quickly begin changing their lives in positive ways
CALUM A. MACRAE, MD, PHD which was approved for reimbursement by CMS. An and not have to wait or come back due to a delay in
overwhelming majority of Insights Council members, care,” he says. He pays particular attention to
82%, say they use telemedicine to conduct non- patients who don’t have the health literacy to get
COVID-19 visits deemed appropriate for virtual visits. proper follow-up care on their own. “They don’t know
“We resisted the use of virtual care for the better part the natural progression of the disease and I do, so I
of a decade and yet we were able as an industry to advocate and give them a voice.”
pivot to deliver nearly 100% virtual care in only a few
days when it suited us,” MacRae says.
82%
Crichlow says the pandemic has been a learning
experience, including that patients don’t have to come
of Insights
to the office every time in order to stay healthy. That
Council members say they
relationship can be sustained via telehealth. Another
use telemedicine to conduct
lesson: “In our society, we pay the least for the things
non-COVID-19 visits deemed
that are most essential. In this case, primary care. We appropriate for virtual visits
never stopped seeing patients and yet we can barely
keep the lights on,” she says.
Empower your own patients today
Change is happening already and organizations are “It won’t be easy but it’s something we really need
“My institution is starting to
making strides in amplifying the patient voice. to do,” he says.
recognize the real power in
listening to the patient. The “My institution is starting to recognize the real And O’Connor offers this advice to get started:
power in listening to the patient. The patient voice “Measure patient-centered goals and patient-
patient voice is getting louder
is getting louder all the time and being brought centered outcomes because whatever we measure,
all the time and being brought into more and more conversations,” Niehaus says. we work towards.”
into more and more
MacRae believes all institutions can empower their Would you like more insight like this from your
conversations.” patients by reimagining the allocation of peers? Become a member of the NEJM Catalyst
responsibility from the ground up – rebalancing Insights Council today. SIGN UP NOW
KATE NIEHAUS, MBA
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The Power of the Patient Voice

How Health Care Organizations Empower

• moving away from fee-for-service models to empower the patient voice;

• adapting health care access to align with patient needs; and

• updating medical training to include the importance of patient empowerment.

Defining the patient voice

“Medicine is designed to hold

How payment models can mute the patient voice

The Villages Health settled on a primary-care-driven,

Renée Crichlow, MD, FAAFP, Director of

The power of integrating social determinants

If a health care professional is going to ask about social

How pain can impact the patient voice

NEJM Catalyst Insights Council members seem to

Firnhaber says the medical profession has allowed

Documenting the patient voice

It’s one thing to get a patient to open up about their

MacRae says that patients should be empowered to

Educating next-generation medical professionals about the patient voice

“In terms of hierarchy, a “Medical students should be trained in the importance

How COVID-19 changed access and the patient voice

Empower your own patients today

NEJM Catalyst accelerates the transformation of health care

Join thousands of global health care leaders and clinicians

SUBSCRIBE TODAY AT STORE.NEJM.ORG/CATALYST

To join your peers in the conversation, apply to the Council today.

About NEJM Catalyst

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“Medicine is designed to hold

“In terms of hierarchy, a “Medical students should be trained in the importance