White Paper

Person-Centred Care
Systems:
From Theory to Practice

GR Berntsen, M Chetty, L Ako-Egbe, S Yaron,

P Phan, C Curran, I Castro, C Canfield, P Lachman
(A working group on behalf of ISQua)

This paper can be referenced as: Berntsen G, Chetty M, Ako-Egbe L,

Yaron S, Phan Thanh P, Castro I, Curran C, et al. Person-Centred Care Systems:
From Theory to Practice. A White paper for ISQUA; 2022. Report No.:
ISBN 978-0-9955479-2-6
This text expands on a previously published Perspective paper by the
same authors: Berntsen GR, Yaron S, Chetty M, Canfield C, Ako-Egbe L,
Phan P, et al.

Person-centered care (PCC): the people’s perspective. International Journal

for Quality in Health Care, Volume 33, Issue Supplement_2, November
2021, Pages ii23–ii26, https://doi.org/10.1093/intqhc/mzab052

This white-paper has been peer reviewed by Paul B. Batalden, Janne

Lehmann Knudsen, Odet Sarabia and the ISQua Board. We would like to
thank them for their contributions.

ISBN 978-0-9955479-2-6
Foreword

With great pleasure, ISQua publishes this White Paper on Person-Centred Care.

Person-centred care is not a new idea. The authors of this paper found it men-
tioned in publications as far back as 1934. Healthcare professionals would agree
that they are person-centred; that their mission – their core business – has always
been to help their patients.

Hippocrates is quoted as having said, “Cure sometimes, treat often, comfort al-
ways.” This emphasizes the belief that what the physician deals with is not a
disease but a person. This was said in a time when a cure was not the expected
outcome of what a doctor had to offer. As the ability to cure increased dramatically,
the focus shifted toward the disease. Health care professionals became special-
ists, eventually superspecialists, perhaps most manifestly seen among physicians,
but certainly not only here. This added enormous value to what healthcare had
to offer, but other values were lost in the transition. Physicians became problem
solvers and fixers. The core question when meeting a patient would be “What is
the matter?” followed by “What can we do to fix it?”.

Patients and families began to raise their voices to call for something more. To not
‘throw out the baby with the bathwater’. After all, technical expertise is needed,
but it is not enough. Healthcare professionals should appreciate that their task is to
help a person. This is expressed in the question “What matters to you?” followed
by “How can we help you achieve this?”

What will it take to be able to provide genuine person-centred care?

The authors of this paper have come together from across the world, some from a
background as patients or advocates, others from a background as healthcare pro-
fessionals, united by the desire to help healthcare professionals and policymakers
answer this question. Their outset is summarised in four guiding questions:

•• Why is person-centred care so difficult?

•• What is person-centred care?
•• What are the implications of person-centred care?
•• How do we make person-centred care the norm?
4 Person-Centred Care Systems: From Theory to Practice

They do not conceal that it is not just a question of adding a touch of person-
centredness to business as usual. To quote from the Executive Summary:

“To make person-centred care the norm, there is a need to systematically redesign
legislation, organization, funding, information systems, education, and research.
The aim is to design person-centred care into the system so that person-centred
care is the logical choice and is expected and rewarded.”

We hope that this White Paper will guide this redesign. On the other hand, those
healthcare professionals who are not content with waiting for the entire system to
be redesigned will also be able to use the White Paper as a starting point for their
own journey toward person-centredness.

Finally, on behalf of ISQua, I want to thank everyone who has spent time and effort
making this White Paper a reality. The diversity of voices that have contributed is
one of the many things that makes this paper unique.

Dr Carsten Engel

ISQua CEO

June 2022
Table of Contents

Table of Abbreviations 6
Executive summary 7
Chapter 1 – A white paper on Person-centered Care (PCC) – why? 9
Our Aim 10
Our Process 10
Chapter 2 – Why is PCC so difficult? 11
Ignoring the person who is also a patient: 11
Depersonalization: 11
Bracketing of the person 12
Standardization and productization 12
Empathy and compassion fatigue – the vulnerable professional 13
Vulnerable and marginalized populations 13
The consequences of “loss of personhood.” 13
Every system is perfectly designed to get the results it gets 14
The health professional’s dilemma 14
What is the current system designed to do? 16
Chapter 3 – What is PCC? 20
What is PCC?20
The PCC mental model21
The PCC goal hierarchy21
What does PCC look like at the frontline?23
What matters to you – WMTY?24
The case for benevolent paternalism25
Chapter 4 – What are the implications of PCC 26
PCC leads to anticipatory/proactive care 26
PCC leads to integrated care28
PCC leads to improved outcomes 29
Chapter 5 – How do we make PCC the norm? 32
The PCC – language and information flow40
The feedback loops41
Transparency and trust42
Digital tools for PCC43
Chapter 6 – Concluding remarks on PCC 46
References 47
Figures & Tables 54
Table of Abbreviations

CAS Complex Adaptive System

COPD Chronic Obstructive Pulmonary Disease
EBM Evidence-Based Medicine
EHR Electronic Health Record
EU European Union
ICT Information and Communication Technology
IHI Institute for Healthcare Improvement
ISQua International Society for Quality in Health Care
PCC Patient Centred Care
PJ Patient Journey
USA United States of America
WMTY What Matters To You?
WHO World Health Organization
Executive summary

Modern medicine achieves outstanding results and is a huge success. ­However,

both patients and health professionals have repeatedly voiced a vital concern:
health care is currently not paying sufficient respect to the individuality and human
dignity of persons who seek help from care systems. PCC calls for a stronger focus
on and collaboration with the persons seeking care.

PCC care is a sharing of power to ensure that the answer to: “What matters to
you?” drives care decisions. Patients and professionals work together, within the
constraints set by the care system, in a care process to achieve goals that are
meaningful to the person.

The person is an individual with an identity, a history, a cultural and personal back-
ground. The patient is a secondary role the person takes on each time they interact
with health care. Likewise, professionals are persons first and take on the role of
their profession second. PCC builds on the recognition of both patients and profes-
sionals as humans first.

To make PCC the norm, there is a need to systematically redesign legislation,

organization, funding, information systems, education, and research. The aim is to
design PCC into the system so that PCC is the logical choice and is expected and
rewarded.

In a system of multiple self-regulated agents, the tools for change include:

•• Changing the system's goal from diagnosis centred, episodic and reactive care
to person-centred, integrated and pro-active care.
•• Educating professionals ⇒ making it both safe, expected and easy to tailor
evidence-based care to the person's needs, values and preferences.
•• A new information flow ⇒ make “what matters” to the patient the goal of care
and create an information flow that shows how care decisions in the patient
journey are linked to the goal. Evaluations that provide system feedback on the
impact on patient defined goals.
•• Align the system structures to the new PCC logic: Check that incentives
reward PCC, that legislation allows information flow along the patient journey,
8 Person-Centred Care Systems: From Theory to Practice

that information systems support the patient goals, the seamless patient jour-
ney and proactive management of risk, and that organizations are encouraged
to work together to reach patient goals.

Care professionals are "visitors" in the patient's life. The patient is the host, guide,
and enabler of the healing journey. The care system's goal is to enable the person
to thrive in their life with as little support from health care as possible.
Chapter 1 – A white paper on
­Person-centered Care (PCC) – why?

Modern medicine achieves outstanding results and is a huge success. We know

more about improving both individual and population health than ever before. How-
ever, as we witness these giant steps forward, both patients and health profes-
sionals have repeatedly voiced a vital concern: Health care is not paying sufficient
respect to the individuality and human dignity of persons who seek help from
care systems. PCC calls for a stronger focus on and collaboration with the patient.

The call for PCC is not new. Already in 1934, Gordon wrote:

“...what else could a patient be but a person? The answer is that in the progress of our
art the case of illness may, by almost imperceptible stages pass, from being a person
through the stage of being a problem and end in being regarded as so much material. [2]

Many voices across time, geography, and culture document the need for PCC
[3–7]. There are many published descriptions of why PCC is important and what
PCC is [8–13]. Numerous well-designed interventions have been trialled to improve
PCC [14–18].

Yet, patients still regularly report care that does not answer their perceived needs
and may even be experienced as harmful and traumatic [19–27]. Mr Porter’s story
below provides a distressing example:

Mr Porter, a paediatrician, suffered a spinal cord injury in 2009. While he was in the hos-
pital for this injury, he experienced the following:

“Stopping at my room, I could hear the voice of the Head Nurse with another voice. The
next moment I felt pain on my head as the bandage was truly ripped off the back of my
scalp, and I heard a voice say, “OK, we’ll look at it again next week.”

And silence. I turned the wheelchair around; no one was there…. Spectacular 21st-
century technology had truly saved my life, but on the other hand, communication
between the patient and the doctor fell so low, that the doctor did not even feel that he
had to come around to the front of my wheelchair and say, ‘Good morning, how are you?
I’ve come to look at the sore on the back of your head.’”

 (personal communication, Israel)

The call for PCC continues to come directly from patients (https://patientrevolu-
tion.org/story-library), from international health management organizations such as
WHO [28], the Institute of Medicine in the USA [29], the EU [30], from professional
10 Person-Centred Care Systems: From Theory to Practice

voices [31], researchers [32] and of course from patient advocate organizations
(Beryl institute, Planetree, Picker Institute, The Patient Revolution).

Our Aim:
This work was initiated by ISQua, who assembled a group of patient representa-
tives across four continents and challenged us, as both patients and professionals,
to take PCC one step further.

The dual goal of this white paper is to contribute to a new understanding of what
PCC is and contribute to making PCC a system characteristic of care systems all
over the globe.

Our Process:
Unlike other work on PCC, which mainly originate from western contexts, this doc-
ument started its development in an international group of patients, professionals,
and researchers with relevant life and professional experience with PCC—and the
lack of PCC. We come from African, European, South and North American, Middle
Eastern, and Asian backgrounds. Despite such diverse settings, our shared stories
and experiences connect as a solid foundation for common answers to these guid-
ing questions:

•• Why is PCC so difficult?

•• What is PCC?
•• What are the implications of PCC?
•• How do we make PCC the norm?
Chapter 2 – Why is PCC so difficult?

A patient identifies a person receiving care from a healthcare service. Every patient
is, first and foremost, a person. A patient does not stop being a person with an
identity when they become a patient. “Patient” is a role that persons have from
time to time. We will try to keep the terms “person” and “patient” apart, as the
first pertains to the whole individual, with an identity, a history, a cultural and per-
sonal background. The second, the patient, is a role persons take on each time
they interact with health care.

Patient empowerment has come to be a key term in PCC literature [33]. When
used, it signifies system or professional support to patients in “…a process through
which people gain greater control over decisions and actions affecting their health”
[33]. An empowered patient feels both well-informed and entitled to take action
and contribute to their care. As such, the empowered patient is a pre-requisite for
PCC.

However, patients are persons who are already powerful and autonomous in their
own lives. No one would think to “empower” a customer in a grocery store. The
term “patient empowerment” indicates that the person is dis-empowered when
they become a patient. The power imbalances between patients and care profes-
sionals are at the core of the call for PCC.

Ignoring the person who is also a patient:

The following phenomena, often working together in concert, are thought to facili-
tate the distancing that allows the professional to “ignore the person” and disem-
power the person when they are patients.

Depersonalization:
The de-personalization is enabled by the quartet of 1) De-individuation: the pro-
cess of disregarding or even erasing individual traits or symbols of identity, such
as name, appearance, personal history, etc. 2) Denial of agency: Someone who is
prevented from acting, such as ill persons often are, become less able to assert,
underline and express their individuality. 3) Dissimilarity: Common ground is not
apparent when another’s lifeworld is so different from one’s own. 4) Confusing the
patient role with the person’s identity. Personal and cultural background shapes
people’s understanding of the patient role. How a person acts in a patient role may
differ substantially from how the person acts outside of a health care context.
12 Person-Centred Care Systems: From Theory to Practice

This quartet pushes the unaware professional towards an implicit perception of

the patient as someone who belongs to a group of “others” instead of belonging
to “me and mine.”

Bracketing of the person

While professionals are well aware of the inseparable nature of person and body, in
diagnosing or deciding on treatment for a health challenge, the professional focus
may move away from the person who lives in the body. While “problem-solving”
is ongoing, the personal relationship may be neglected, as these processes are
thought to be in cognitive competition. Professionals may not be able to perform
complex problem-solving and continue an empathic interaction with the patient
simultaneously [34] [35].

While the professional focuses on “biology,” a fundamental shift occurs in the re-
lationship between these two humans: The professional, another person, takes on
the role of content expert. The person in the patient becomes invisible and loses
their relevance to the situation at hand. The human body becomes the substrate
for professional work. The person is “bracketed” for a while.

Patients both recognize and tolerate this “bracketing” when it happens as part of
an acknowledged and mutual understanding of the necessity to shift focus for a
time. As long as the professional honours and recognizes the person, both before
and after their focus shift to biological/ condition issues, all is well. The patient is
usually appreciative of the necessity to focus on one thing at a time and realizes
that this may be in their own best interest.

However, by not greeting Mr Porter, the physician effectively reduces Mr Porter

to merely a body. Mr Porter’s right to self-direction is overruled, and Mr Porter’s
identity as a person is not only threatened, it is momentarily erased. Mr Porter is
treated as if he were a “thing” without personal needs for recognition, support,
information, and involvement. There is no “start” nor “stop” to the bracketing.

Standardization and productization:

Evidence-based guidelines and standardized care pathways are beneficial tools that
help clinicians ensure technical care quality. However, evidence-based medicine
(EBM) was never meant to pave the way for “cookbook medicine.” EBM always
intended the conscientious, explicit, and judicious use of current best evidence
from research and clinical experience to be integrated with a person’s needs, val-
ues and preferences as they arise from the health challenge [36]. Without concom-
itant tailoring to the person, a strong focus on compliance with guidelines and path-
ways turns care into more of a transaction than a relationship, denying personhood
to both patient and professional.
 Chapter 2 – Why is PCC so difficult? 13

Empathy and compassion fatigue – the vulnerable

professional:
Becoming overwhelmed and unable to remain close to a person’s suffering can
interfere with care. The person, who is also a professional, may cope with this
painful experience by creating a mental distance between oneself and the subject,
thereby implicitly disregarding the patient’s personal needs. The result is an inter-
action that is emotionally stunted. Resistance to becoming vulnerable by profes-
sional persons is part of the challenge. Authentic relationships between persons
involve being open to the other. Role or task definitions created without reference
to the underlying person, in both the professional and the person, contribute to
these confusions.

Vulnerable and marginalized populations

It is estimated that by 2030 up to two-thirds of the world’s poorest population will
be living in settings of fragility, conflict, and violence. (FCVs) [37]. Marginalized and
vulnerable populations such as low-income and uninsured patients, immigrants,
and minorities due to ethnicity, disability, sexual orientation, or age are typically
underserved by social and care systems. Often environmental challenges, such
as unsafe and unstable housing, unhealthy environments, and lack of basic needs
such as food, shelter, and clothing, exert a disproportionally high disease burden.
Paradoxically, these populations who most need care experience more significant
barriers in accessing care than “normal patients” due to systematic discrimination
of persons with lower health literacy, disabilities, and less available social and phys-
ical resources in their network.

For individuals in minority and low-income groups, a pervasive mistrust of the

healthcare system compounds the situation. A history of trauma sensitizes the
person even more to inhumane or mechanical care [38]. Persons who sense bias
or being “talked down to” experience mistrust and exclusion from decisions rele-
vant to their bodies and health.

The consequences of “loss of personhood.”

The phenomena that enable “disregard of the person” are complex, as they occur
alone or in concert. Their effects, though perhaps unintended and even undetect-
ed, are still detrimental. The experience of being rendered invisible and irrelevant
to decisions that touch upon one’s health and body is experienced as disturbing
and problematic by most humans. Research shows that even slight disregard for
the person and their identity has detrimental effects on humans: it permits subtle
forms of bullying, harassment, and social rejection [34, 39]. Victims report confu-
sion, betrayal, and humiliation [39]. The causes of a mechanical and depersonalized
care system are independent of low and high-resource settings, whether in a social
14 Person-Centred Care Systems: From Theory to Practice

context of conflict or peace. However, the harms may be worse in the social con-
text of conflict and poverty.

Ignoring the person violates the ethical principle of autonomy, yet it is often “for-
given” because of one or more of the following circumstances: The professional
has a benevolent purpose and a genuine wish to help. The patient has voluntari-
ly subjected themself to a professional biomedical examination and may consider
the biological focus to be expected. The patient generously concedes that the de-
personalization side-effect was unintended. The de-personalization is brief or has lit-
tle impact on the patient’s life. The patient is mentally and physically vulnerable with
no resources to object. The patient is dependent on the professional and feels that
speaking up may jeopardize care quality. Both the patient and the professional find
themselves in a system environment where depersonalization has been normalized.

Even though professionals are regularly forgiven for ignoring the person in the pa-
tient, this does not make it less wrong, and does not remove the suffering it may
cause:

“Suffering is experienced by persons, not merely by bodies, and has its source in challeng-
es that threaten the intactness of the person as a complex social and psychological entity.
Suffering can include physical pain but is by no means limited to it. The relief of suffering
and the cure of disease must be seen as twin obligations of a medical profession that is
truly dedicated to the care of the sick. Physicians’ failure to understand the nature of suf-
fering can result in a medical intervention that (though technically adequate) not only fails
to relieve suffering but becomes a source of suffering itself.” [40]

Professionals also suffer dehumanization when forced to fit into systems that dis-
courage natural empathy and engagement with patients, engendering the same
negative emotions and guilt and shame. The concept of the impartial professional
who executes guideline-based diagnosis and treatment may be as important to
question and neutralize as depersonalization of the patient [41].

Every system is perfectly designed to get the

results it gets
There is no single activity, element, or “silver bullet” that will solve the challenge
of PCC because the nature of the problem can not be reduced to a simple “cause
and effect” challenge. Understanding how to change first requires understanding
why change has not materialized before and learning from previous efforts.

The health professional’s dilemma

When asked why there is an inconsistent delivery of PCC, professionals point to
a lack of time and competing and conflicting pressures to deliver care according
 Chapter 2 – Why is PCC so difficult? 15

to professional standards and employer and system regulations. In current care

systems, the system logic is focused on offering the most beneficial care available
and applicable to the case in front of them, as judged by professional standards.
Results are judged by hard outcome measures that are easy to measure and inter-
pret, such as rates of post-operative infections, mortality, and disease recurrence.
Evidence-based guidelines are admirable tools and will continue to be so in a PCC
system. However, their proper application is to serve as guides supporting patient
values, needs, and preferences, not as an end in themselves.

The reality of Mr Porter’s consultation was not a meeting between three individu-
als: the patient, the nurse, and the doctor. It was a patient–system meeting where
the doctor and the nurse represented the care system. In the patient–system
meeting, the individual professional has limited freedom to invent their own rules
of engagement. Instead, the rationale and logic of the system direct the behaviour
of the professionals in concert with their professional training and personal beliefs
and values.

Figure 1: Patient-System Meeting

The system expects the physician to prioritize patients with urgent needs over
those with issues “that can wait,” such as Mr Porter’s challenge. Clinicians are
to deliver satisfactory quality care to all patients within the day’s working hours. If
there is a choice, choose treatments and procedures that provide equal benefit for
the least cost. The professional-system perspective may be that there is little room
for the PCC approach. PCC is perceived as cumbersome, time-consuming, and
potentially risky. Allowing the patient to decide might even lead professionals to
take responsibility for decisions with which they are uncomfortable [42, 43]. While
all patients want to be treated respectfully and have “What matters” considered,
it might be difficult for professionals to gauge how much power and r­ esponsibility
the patient wishes to assume. Current care models base their quality-of-care
assessments on technical quality, not patient-experienced quality. Patient needs,
values and preferences are difficult to elicit and may include wishes that the
professional has no expertise nor power to solve. In short, from the system perspec-
tive, patient defined goals can be described as soft, irrelevant, ill-defined, resource-
consuming distractions.
16 Person-Centred Care Systems: From Theory to Practice

With this mindset as a backdrop to the patient-system meeting, the clinician will
disregard their inclination to act as a fellow human being and often honour system
priorities before looking at patient priorities. After the system requirements have
been fulfilled, the professional will attend to “niceties” such as PCC if the time,
inclination, and resources are available.

When experiences like that of Mr Porter become common and even normalized,
this can only be described as a system feature. A systematic focus on disease/
condition/ malfunction and professional skills, rather than on the health and lived
experience of both patient and professional persons, promotes a paternalistic ap-
proach that is distressing and painful. The system fails to create the necessary
expectations, support, and training to ensure that all humans, both patients, and
professionals, are treated as persons first. The system puts the autonomy of the
patient at risk.

What is the current system designed to do?

To make a change, it is central to understand the current health care system’s
design and how it comes to produce its non-PCC events. We will use tools from
“systems thinking” [1, 44] to structure our description of health care systems.

“The Iceberg Model argues that

events and patterns (which we can
Events Visible
observe) are caused by systemic
structures and mental models, Patterns

which are often hidden. Systemic Systemic

structures
structures are the organiza­ tional Hidden
hierarchy; social hierarchy; interre- Mental models
lationships; rules and procedures;
authorities and approval levels; pro- Figure 2: The Iceberg Model, from [1]
cess flows and routes; incentives,
compensation, goals, and metrics; attitudes; ­reactions and the incentives and fears that
cause them; corporate culture; feedback loops and delays in the system dynamics; and
underlying forces that exist in an organization. Behaviors derive from these structures,
which are (in turn) established due to mental models or paradigms.” [1]

The visible events – the roles in the care process

The visible core events and event patterns in care systems are the health care con-
sultations, which are created through the interactions among three roles:

•• The person who requests help to improve or maintain the health from a pro-
fessional. (Fig 3 – blue line)
•• The professional who represents the health care system (Fig 3 – red line)
•• The system/ payer, an invisible but omnipresent third partner, who funds and
hosts the care process and indirectly regulates the professional
 Chapter 2 – Why is PCC so difficult? 17

The care process consists of a series of patient-system meetings. The desired

outcome (goal) of the care process, and therefore also the design of the process,
differs by the perspective of each role. The high-level desired outcomes are well
described in many strategy documents, many of which build on the Quadruple
Aim, which outlines the most important outcomes for each of the three roles: For
the patient: patient experience and health and function, for the professionals: The
professional experience and satisfaction, and for the system/ payer: cost-benefit
[45, 46]

Figure 3: The visible events of the health care system: The patient journey (PJ) arises at
the intersections between the professionally defined care pathways (red) and the personal
life pathway (blue) of the patient. The payer/regulator is an invisible but omnipresent
partner, shaping the PJ through funding and regulations

The person, the professional, and the system roles have inherently different views
of the core care process, the information support they need, their desired out-
comes, and their power to impact system design and goals.

The Person’s Goal is to pursue health, which is understood as a resource for

life. This sometimes entails becoming a patient but always involves me as a per-
son. From the persons’ perspective, the care process consists of an ensemble
of consultations that cater to their health challenges as the patient journey (PJ)
[25]. The PJ may move across many different organizations and professionals.

The Professional goal is to help patients attain professionally-defined health

and functional goals by providing the knowledge and skills of their profession.
The professional context is framed by the level (primary vs secondary care), by
18 Person-Centred Care Systems: From Theory to Practice

profession (doctor, nurse, etc.), and by specialization (neurology, surgery, etc.).

In addition, professionals are expected to follow explicit and implicit rules that
exist in the care system that funds their activities.

The System/payer goal is to 1) maximize the care system value for the popula-
tion it serves and 2) protect its members from economic ruin due to health care
expenses. It serves its goal by hosting, organizing, and funding the front-line care
process.

The paradox of care systems – Goal Conflicts

While the three roles all seek to improve health, there are potential goal conflicts
among the three. The activities at the frontline result from more or less explicit
negotiation between patient, professional, and system-level interests. Currently,
the power balance in this negotiation lies in favour of the system and the profes-
sionals, not the patient.

The dominating business model of the early 20th-century health care systems
was to “sell” biomedical knowledge and skills, not to patients directly but to the
third-party payers [47]. In this context, it was the professional and the payers who,
on behalf of patients, formulated patient needs. The strong power imbalance be-
tween the patients and professionals prevented patients from joining in the design
of care systems. The patients were not invited, nor did they ask to be included,
because when care systems were built, no one thought of patients beyond passive
beneficiaries of professional care.

Thus, patients were effectively sidelined as legitimate stakeholders in designing

and developing care at the frontline, middle, or top levels of care delivery systems.
The current care systems still provide a care process designed according to this
logic and rationale of system/ payers and professionals, not patients. Thus, value
in health care systems has broadly come to be understood by professional-and
system-defined outcomes.

To ensure that the three roles work well together, an explicit prioritization among
these goals is needed. The three roles of the care system should be unified by a
common overarching goal that can be used to align the sub-goals. The WHO claims
that:

“Better health is, of course, the raison d’être of a health system, and unquestionably its
primary or defining goal: if health systems did nothing to protect or improve health, there
would be no reason for them.”[47]

Therefore, improved patient and population health is the unifying overarching

goal of all three roles: patient, professional, and system/payer. Although the
 Chapter 2 – Why is PCC so difficult? 19

World Health Organization (WHO) defines health as a state of complete physical,

mental and social well-being and not merely the absence of disease or infirmity,
the care system traditionally builds on a professional definition of health. As we
have seen above, this leads to several issues where the professional tends to
ignore the person.

The invisible implicit mental models of the current care system reflect a logic of
siloed and episodic care for a single diagnosis to meet professionally defined out-
comes. Current health care is designed to meet the goals of professionals and sys-
tems, not the goals of persons who carry the primary responsibility for their health.
Chapter 3 – What is PCC?

The person is the only legitimate decisionmaker on questions of the person’s

body and health. Designing a patient journey without an intimate knowledge of
the person for whom we are designing it is like working in the dark. The person is
the owner of the health problem. They must live with the treatment and are gate-
keepers of all self-management resources. The person has insights and priorities
relevant to the feasibility and effectiveness of both self-managed and profession-
ally delivered care. Especially in a situation where multiple chronic conditions
become the norm in ageing societies, life and health issues are woven tightly
together, and the involvement and engagement of the person are paramount for
success.

The professional role is to support the person in making an informed decision built
on professional knowledge, experience, and skills. The patient cannot make deci-
sions independently, as they may not have the necessary knowledge. The profes-
sional cannot decide on their own, as they can not know how the decision might
impact the person’s life.

To ensure that the person is truly an equal partner in decision-making, the key is
sharing power between patient and professional. In the messy world of frontline
care, the issue of power-sharing is not so simple. Decisions are based on knowl-
edge about what is possible, which options are available, and what likely conse-
quences may be, both for the person, the professional, and others who may be
affected. The person must have the necessary information, confidence, and sup-
port to exercise power. The professional is an enabler of the person’s decision by
supporting the person in understanding their health challenge, understanding their
options, and allowing them time and support for weighing their options against
“that which matters” in their life [48].

What is PCC?
Every person is born with a body and health that they own and for which they are
responsible. Health care’s role is to support the person in improving and sustaining
their health. Health care can provide means, support, and guidance, but the person
is, by law and, in practice, the final decision-maker. Without understanding what
the patient desires and finds attainable, the health care effort may be wasted or
even cause suffering. Professionals and the system/ payers must, by design, sup-
port and involve the patient in a co-creation of every decision on both goals and
processes for care at all levels of care.
 Chapter 3 – What is PCC? 21

Only when patients cannot take an active role as custodians of their health does
health care have a duty to take over decisions and provisions for improving and
sustaining a person’s health.

PCC embraces the patient as an equal partner in the design and co-production of
the patient journey (PJ) towards meaningful goals for the patient, together with
professionals and the system/payer. A successful PJ supports “what matters” to
the patient within professional, legal, ethical, and economic constraints. All three
roles need to be represented and included in the design, delivery, and evaluation
of care.

PCC care is a sharing of power to ensure that the answer to: “What matters to
you?” drives care decisions. Patients and professionals work together, within the
constraints set by the care system, in a care process to achieve goals that are
meaningful to the patient.

The PCC mental model

In a PCC care system, the overarching goal needs to include the patient perspec-
tive on health. We propose that to make PCC ubiquitous, it is necessary to build
the patient perspective into every aspect of the health care system. The redesign
of care from profession-centred to person-centred, from professionally-defined
outcomes to “what matters to you?”, and from diagnosis-specific pathways to
patient journeys.

The PCC goal

hierarchy
The PCC goal hierarchy from
figure 4 aligns the goals from all
three roles so that the tensions
that arose from the lack of prior-
itizing PCC disappear.

•• PCC builds on the tenet

that the person has a legit-
imate right and duty to de-
cide over their health and Figure 4: The new mental model: The overarching
goal of the care system is to improve and maintain
body. Health is understood
health, understood as a resource for “what matters”
as a resource for “what
in the life of patients. Professionals serve “what
matters” to the person in
matters”. The system level, serves professionals.
their context and life.
22 Person-Centred Care Systems: From Theory to Practice

•• A Patient Journey (PJ) is the ensemble of care events organized by time across
all diagnoses and providers, with the intent to improve or maintain health for
the person.
•• The frontline meetings that make up a PJ occur between a person and one or
more professionals.
•• Constraints set by the “system” shape the PJ meetings. The system ensures
an organizational framework for PJ activities, funding for the PJ, and is re-
sponsible for the supporting structures and resources necessary to provide
high-quality PJs.
•• All other roles in the system support or contribute to one or more of the three
roles: The patient, the professional, and the system. What is desirable and
possible at the system and frontline levels is negotiated among these three.
•• Quality of care is a PJ where goals are co-produced by all three roles in a nego-
tiation where “what matters to the person” is the overarching goal. Patients
and professionals translate “what matters” into realistic goals for care within
the constraints of what is professionally, legally, ethically, and economically
possible.
•• Care decisions should be built on the best available evidence, understood as
the judicial application of research, clinical and patient-based knowledge that
serves to meet “what matters” to the patient.
•• A PJ is successful when the patient, the only “traveller,” arrives at the nego-
tiated goals.

The following table outlines the role changes that will ensue from a PCC mental model:
Table 1: The role changes that will ensue from a PCC mental model

Old Role New

•• Patients are passive recipients Patient role •• I am a person, responsible for
of care. my body and health and seek to
⇒
•• Health is professionally defined. be active in my self-care.
•• Care systems evaluate and •• Health is a resource for “what
treat health challenges that fit matters” to me.
in professionally pre-defined •• Care systems guide and support
diagnoses. my quest for health on my
terms.
•• The patient is a visitor in the Professional •• The professional is a visitor in
professional world. role the patient’s life.
•• The professional invites •• The patient invites the
⇒
the patient to participate professional to guide and
in evidence-based and support “what matters” using
professionally defined pathways evidence and experience-based
and goals. knowledge and skills.
•• Professionally defined outcomes •• The patient journey success is
define treatment success. defined by “what matters.”
 Chapter 3 – What is PCC? 23

Old Role New

•• The system units are siloed by System role •• The system units are self-
care level and profession. organizing and responsible for
⇒
•• The system funds, supports, patient journeys.
and controls care delivery •• The system funds, supports,
according to silo-based service and controls patient journeys.
production •• System success is measured in
•• System success is measured cost-benefit, where the benefit
in cost-benefit, where the is a combination of patient-
benefit is professionally-defined defined value and technical care
technical care quality. quality

What does PCC look like at the frontline?

The hallmark of PCC is that the care goals, plans, and delivery support “what
matters” to the patient. The primary goals of the PJ should derive from “What
matters” to the patient. Professional goals are secondary because they serve the
primary goals [49].

The PCC care process is a stepwise process consisting of the following phases
[25]:

•• To seek a sensitive and empathic process to understand “what matters” to

the person. There are as many ways to listen to another as there are humans.
Many texts expand on the theory, knowledge, and skills of frontline PCC and
research-based frameworks designed to support effective person-centred
communication that fits well with “understanding what matters.”
•• To translate “what matters” into goals relevant and realistic for care within
safety, ethical, economic, and legal constraints. Patients cannot be expected
to formulate a “what matters” that fits directly into goals relevant to care.
Many things that matter to a person may not be possible for health care to
influence. What matters may lie outside of that which is professionally, legally,
ethically, or economically possible. “What matters” is only the first step in
co-creating a care goal. The professional’s job is to transform “what matters”
into relevant goals for care that will support “what matters” within the realm
of what professionals can do and what system/payers will fund.
•• Shared decision-making is a defacto sharing of power. The professionals outline
the options and enable the choice, but the patient is the final decision-maker.
Being in charge fosters responsibility, ownership, adherence, preparedness,
and trust. The patient’s voice may be fragile and need support. The “what
matters to you?” question is even more important for persons with less ability
or self-efficacy to communicate. The system needs to provide training, time,
and opportunity to build trust and inform patients sufficiently for them to be
able to make their own decisions.
24 Person-Centred Care Systems: From Theory to Practice

•• The person may wish to involve people close to them or who are affected by
their health and health decisions. Thus the shared decision-making process
should explicitly address the involvement of other persons according to the
wishes of the patient. In the case of people with limited ability to be responsi-
ble for their health, the parent/ guardian /caretaker must be acknowledged and
actively included in decision making.
•• To plan and deliver the patient journey in alignment with “what matters” and
best practices as recommended by the professionals, in collaboration with the
patient.
•• To evaluate care in terms of “what matters” as the overarching aim. Sub-goals
should include the patient experience, patient and professionally defined health
and functions, system/payer defined cost-benefit, where benefit includes both
patient and professional perspectives. All three roles must participate in the
evaluation.

What matters to you – WMTY?

“What matters to you?” («WMTY?»), first coined by Barry in his seminal paper [7],
has come to inspire a new and very concrete understanding of PCC. The «WMTY?»
question is not a method but rather a concept that encourages providers to refocus
their attention from diagnoses and medical problems to identify those issues that
truly matter to the person [13]. The Institute for Healthcare Improvement (IHI) has
championed what they call “a flipping of health care,” where «WMTY?» drives
care decisions:

“The essence of flipping healthcare, as argued by Michael Barry and Susan Edgman-
Levitan, is that providers should ask, “What matters to you?” as well as, “What’s the
matter?” (…) Flipping healthcare means flipping the balance of care from the hospital
to the community; the balance of delivery from individual providers to care teams; the
balance of power from the provider to the patient and family; the balance of costs from
treatment to prevention and co-production; and the balance of emphasis from volume to
value and from healthcare to health.” [50]

«WMTY?» is a question that most people have not given much thought to, so it
may take time to develop an answer. What matters may also change swiftly during
illness, as insights and priorities change. «WMTY?» may need to be revisited reg-
ularly or when needed.

This question leads the professional to be curious and explorative about the other.
It enables the professional helper, with all their bio-psycho-social knowledge and
 Chapter 3 – What is PCC? 25

skills, to understand better how to fit that help into the life of the other. It is a prag-
matic way of operationalizing Kirkegaard’s proposition:

“If One Is Truly to Succeed in Leading a Person to a Specific Place, One Must First and
Foremost Take Care to Find Him Where He is and Begin There. This is the secret in the
entire art of helping.

Anyone who cannot do this is himself under a delusion if he thinks he is able to help
someone else. In order truly to help someone else, I must understand more than he–but
certainly, first and foremost, understand what he understands.

If I do not do that, then my greater understanding does not help him at all. If I neverthe-
less want to assert my greater understanding, then it is because I am vain or proud, then
basically instead of benefiting him I really want to be admired by him.” [51]

For the «WMTY?» question to support PCC, professionals must acknowledge their
role as “system agents.” Therefore, the answer to “WMTY?” needs to be shared
sensitively with other colleagues who work with the same patient. In a complex
PJ with many professional contributors, it may be important to restrict the dialogue
about «WMTY?» to a few designated care professionals who can support continui-
ty and trust. Sharing sensitive issues indiscriminately may threaten trust. However,
being asked the same questions repeatedly can also endanger trust. Therefore,
discussing the formulation and sharing of the answer to “WMTY?” with the pa-
tient is critical. Documentation of «WMTY?» is a particular concern since, without
such documentation, new health care professionals’ ability to maintain consistency
at the system level is difficult.

The case for benevolent paternalism

Professionals must make the best choice they can on behalf of the patient in some
extraordinary situations:

•• When you cannot know the patient’s wishes (unconscious patient).

•• When the disease or condition impairs the patient’s ability to make decisions.
•• When the patient is too overwhelmed and there is no time to work with them.

Making choices on someone else’s behalf is the exception, not the norm. The
professional dual duty in such situations is to 1) act in the presumed best interest
of the patient and 2) to help restore the patient, as far and as soon as possible, to
a state where they may again collaborate with the professional in voicing “what
matters” to them [48]. As soon as the extraordinary situation has passed – if pos-
sible and relevant – revisit the decision with the patient to learn and adjust care to
the patient’s preferences.
Chapter 4 – What are the implications
of PCC

PCC leads to anticipatory/proactive care

It is not possible to not manage your health. We all manage our health, in good or
bad ways. A basic tenet of PCC is to support the person who “owns” a body to
self-manage the health of that body in the best possible way.

Self-management can theoretically be divided into what the person does to seek
treatment for current symptoms, diagnoses, and conditions, and to avoid future
health issues (e.g. quit smoking, or treat hypertension). Health care is currently
designed to provide reactive care for already diagnosed conditions. However, re-
active care does not do the best job of supporting the person in maintaining their
health. The re-active health paradigm stems from a view of the patient as a passive
recipient of professional care. With PCC, the patient role changes into an equal
active, informed partner. A partner who has a strong interest in reactively treating
and proactively stopping a condition from developing further.

Pro-active care includes self-management activities, primary and secondary pre-

vention, early intervention, and anticipatory management of current conditions. It
often produces better results in terms of health for the individual and is less costly
both for the individual and the payer [53]. Proactive care is usually heavily depen-
dent on the person’s involvement in managing their health. It makes sense that
the self-care resources of the person are most efficiently marshalled when the
goals of self-care align with other life goals. With truly shared decision making, the
PCC approach is also the approach that will support patient motivation for healthy
life choices. We know that solid patient involvement and engagement outcomes
improve [52].

However, competing life priorities and goals may override rational, proactive health
choices. Pro-active self-management is often hard work on the part of the patient
with intangible “non-event” rewards, such as not getting a heart attack. Key to
the success of pro-active care is strong ownership of the goals of pro-active care.
Showing how life and health goals are tied together may foster ownership and en-
gagement in self-care, improving outcomes. By focusing pro-active care explicitly
on risks that might threaten “what matters” to the patient, care activities become
meaningful. We propose that pro-active care is a consequence of PCC.

The link between PCC and pro-active care is perhaps the most important implica-
tion of PCC – It prevents undesired health events for patients. For professionals,
 Chapter 4 – What are the implications of PCC 27

it produces better outcomes. For the system/ payer, avoidable care is an attractive
outcome. It theoretically results in care for the population that is better, and often
[54], but not always[55], cheaper than crisis management.

Proactive care is fundamentally different from reactive care. All proactive and pre-
ventive care builds on the early identification of risk as a basis for early intervention.
Proactive care has implications for the organization of care and design of PJs.

•• Recognizing the person themself as an active partner and resource; they are
always there, have the best opportunity to identify risk, and have the most to
gain from avoiding a potential crisis.
•• Systematic identification of risk before the risk manifests as the undesired
outcome. The risk analysis could be done by reviewing possible risk situations
or directly monitoring risk factors.
•• Risk identification is only effective if coupled with a threshold for action and
an action plan.
•• The person is almost always an essential partner in the risk-mitigation activity.
They must have access to the knowledge, skills, and training to do what is
agreed. This requires support for self-efficacy and health literacy [56].

Pro-active care is not in itself PCC. PCC is defined by equality and power-sharing
in the co-production of pro-active care. In opening up for genuine power-sharing,
the patient is supported in making their own choices on their terms. Adherence
and compliance to one’s own decision are much more likely than if it is thrust upon
one [57].

When the patient makes poor choices…

Beware of introducing self-care goals that are top-down societal or professional
goals. Health care professionals will experience patients who do not follow their
advice. For example, the smoker who cannot quit, or the young diabetic who con-
sistently has a high long-term blood-sugar level [58]. This can be professionally frus-
trating. However, the health professional is not present to make patients choose
the «right» action in terms of health. Patients have the right to put their health sec-
ond to other life goals. We know that finger raising, shaming, and blaming patients
for unhealthy life choices and non-adherence do not produce the changes we seek.
Instead, it induces hostility and loss of trust [38].

Such challenges can be reviewed and discussed in an open, transparent, non-

judgmental, and respectful discourse. Sometimes this will result in a new under-
standing and a better decision for both parties. There are tools such as “guid-
ed self-determination” [59] and “motivational interviewing” [60] that are devel-
oped to unveil, both to the patient and the professional, the basis for the inability,
28 Person-Centred Care Systems: From Theory to Practice

unwillingness, or even disagreement on following through on professional advice

may be: As Zoffman writes:

“…Shared Decision Making in chronic care may be a question of professionals gaining

insight into patients’ decisions, rather than the opposite” [61].

When the patient disagrees with professional advice

Some health professionals fear that PCC may make professionals responsible for
treatment they feel is wrong. This fear is unfounded. Neither professionals nor pa-
tients can force decisions upon one another. Patients can not force professionals
to provide illegal, harmful, or unprofessional care. Both the patient and the profes-
sional are entitled to disagree with one another. The care choices that are made
can be vetoed by either patient or professional. To move forward, both need to find
solutions acceptable to both parties.

In the few cases where the patient wishes for something illegal or outside of eco-
nomic or ethical constraints, the professional must make this clear to the patient in
an empathic and non-judgemental dialogue. At this point, it is fair to issue a warn-
ing to patients: If a patient wishes to act in a way that is against the professional’s
explicit recommendation, it follows that the patient must also take responsibility
for that decision. There may be good reasons for such a decision, such as not pur-
suing life-prolonging treatment for a terminal illness.

The professional’s responsibility is to make the patient aware of the possible con-
sequences. Different countries will have different rules on how to document such
disagreements. Both parties should make sure that the professional advice, the pa-
tient decision, and the arguments from both parties are documented in the health
record.

PCC leads to integrated care

In a profession-centric system, professionals tend to work towards profession-
ally defined goals that may not align with one another [49]. In a redesigned PCC
system, all professionals should work towards “what matters” as defined by the
patient. The overarching patient defined goals have the effect that professional
goals must align with the overarching common patient-defined goal. The patient
defined goal has a coordinating effect. The professional goals do not disappear, but
they will be weighed and prioritized in the order of importance for the overarching
patient-defined goal.

This alignment process is especially important in multimorbid PJs, where profes-

sionals and patients must carefully weigh and consider the possible pros, cons,
 Chapter 4 – What are the implications of PCC 29

and interactions likely to result from the combination of multiple single-disease

recommendations [62]. The multiple lines of advice should ideally result in a
well-orchestrated concert for the maximum overall benefit for the patient. There is
no generally accepted method of weaving condition-specific treatment into a co-
herent, integrated care plan [63, 64]. However, competent professionals can sug-
gest a gradual starting plan of prioritized activities, then stepwise test and adjust it.
Multi-morbidity care plan building is a team effort, as one person rarely has all the
answers regarding what is both possible and realistic in areas where they are not
experts. Complex coordination work can be time-consuming and specialized work
that requires the timely involvement of each specialist to deliver their piece to the
larger puzzle.[65] Integrated, coherent, comprehensive, or team-based care results
from a PCC approach.

Importantly, we wish to underline that integrated care is not in itself PCC. The
distinction between the two is essential because we frequently see a misunder-
standing that if care is integrated to accommodate a person’s multiple problems, it
is also claimed to be person-centred. PCC is defined by equality and power-sharing
in the co-production of care planning and delivery. Integrated care is simply the
coordination of care resources across time and place. If such coordination is under-
taken without aligning with the patient’s “what matters,” care can be integrated
but not person-centred.

PCC leads to improved outcomes

Although the basic foundation for PCC is that it is “the right thing to do,” the logic
of health care professionalism demands that all changes to care decision-making
be grounded in a demonstration of improved outcomes. We face hard questions
like: Could PCC lead to poorer outcomes? Are we risking hard-earned progress
grounded in standardized and biomedical approaches if we lean too far into PCC?
In other words, is there a conflict between PCC and successful biomedical stan-
dardized care? Do we have to choose one over the other?

Fortunately, no research we are aware of supports this fear of contradiction be-

tween the two ways of thinking. On the contrary, the research on the effects of
PCC generally supports the claim that PCC and biomedical care are complementa-
ry. Biomedical expertise is the basis for the person to seek support and help from
health care in the first place. The same expertise is necessary, also when care
serves personal goals. The research that has been done in this still-young area is
supportive of the claim that PCC and technical care are complementary and prob-
ably even synergistic.
30 Person-Centred Care Systems: From Theory to Practice

While a full review of the documentation for PCC here is outside the scope of this
book, we will present some of the most compelling work that has been done to
show that PCC improves outcomes:

Weiner showed that physicians listening to and considering their patients’ con-
cerns when making clinical decisions led to improved biomedical outcomes. Wein-
er writes:

“We found that when physicians take into account the needs and circumstances (that is,
context) of their patients when planning their care, individualized health care outcomes
improve. Although it may seem intuitive that addressing a patient’s inability to pay for
medication results in improved diabetes control, addressing a misunderstanding about
instructions essential to self-care results in lower blood pressure, or addressing compet-
ing responsibilities for the care of a chronically ill family member results in fewer urgent
care visits, this study may be the first to document an association between contextualiz-
ing patient care and patient care outcomes.” [66]

In a rigorous Cochrane review of 19 studies involving a total of 10,856 participants,

Coulter found the same effect of personalized care planning:

“We combined and summarised results from studies that measured similar outcomes
and found that involvement in personalized care planning probably led to small improve-
ments in some indicators of physical health (better blood glucose levels, lower blood
pressure measurements among people with diabetes, and control of asthma). It also
probably reduced symptoms of depression, and improved people’s confidence and skills
to manage their health”[32].

However, in a review conducted by the WHO, where they combined the concepts
of PCC and integrated care, they were surprised to find that the combination of
the two still lacks documentation. [67]. We posit that the main biological effects
of PCC arise when PCC also leads to improvement in other quality areas, such as
integrated and proactive care. In a scoping review of digitally supported Person-
centred, integrated and proactive care, Berntsen found that:

“…, each component is often studied on its own, so that the maturity of each element in
comparison with other interventions in the same vein and the synergies between them
have not been subject to academic study. [68]

The research in this area is dominated by a reductionist approach that does not
acknowledge the complex adaptive system mechanisms shaping care processes
and outcomes. By trying to isolate the effect of PCC alone, researchers are effec-
tively ignoring how PCC impacts other quality of care mechanisms. Conclusion:
synergies among PCC, integrated care, and proactive care are essential to achiev-
ing hard outcomes. In plain language, listening to patients is ineffective if what you
learn is not shared with the relevant professionals (integrated care) and acted upon
 Chapter 4 – What are the implications of PCC 31

to promote effective care for current symptomatic conditions and future threats
arising from the current situation (pro-active care). It is not rocket science, but it is
complex in that research needs to pay attention to the synergies of PCC, integrat-
ed and pro-active components of care to expect improved outcomes. There is an
urgent need to close this knowledge gap.
Chapter 5 – How do we make PCC
the norm?

“We can’t control systems or figure them out. But we can dance with them!” [44]

Our analysis above showed that care system owners and payers know that it is
vital to respect the population’s wishes through their representatives because
these are either the de facto owners of public care systems or the customers who
indirectly or directly pay for the business as customers. Care systems already have
built-in high-level goals of PCC. Although we don’t have to argue for PCC, incorpo-
rating PCC into the vision and mission statements is not enough.

Identifying action points for change requires understanding health care systems
as a “Complex adaptive system” (CAS) and applying systems thinking to the chal-
lenge. Complexity theory can, at least in part, help to explain why the introduction
of PCC is so challenging. A “quick guide” of the central concepts can be found
below. In the iceberg model (see Figure 2 earlier), the next step is to analyze how
system structures support the processes that arise from the system. If these
structures are not aligned and clear in the prioritization of PCC, any competition for
resources in terms of time, attention, personnel, or money will favour non-PCC.
The main structures in care systems are their regulations, organizations, incen-
tives, information, research, and education structures.

Complexity theory – a quick guide:

A complex adaptive system (CAS) is not directly predictable or governable.
It consists of multiple self-organizing units controlled by local inputs and out-
puts, incentives and logic, which may change over time. The units are inter-
connected and interdependent. A shift in one place in the system may have
ripple effects somewhere far away from its origin, leading to unexpected
outcomes.

Intentional modification in CAS is unpredictable and messy, but it is possible.

History shows that we do it all the time as societies diverge and evolve in
terms of values, principles, and logic. It may be hard to articulate the logics
that governs a network, a system, or a society, especially if the fundamentals
are taken for granted so that we no longer question or put words to it.
 Chapter 5 – How do we make PCC the norm? 33

Child upbringing

Summary of the ERS guideline for management of hospitalised

patients with COVID-19. Abbreviations HFNC: high flow nasal
cannula oxygen; CPAP: continuous positive airway pressure. From:
https://erj.ersjournals.com/content/early/2021/03/07/13993003.00048
-2021.figures-only

Guidelines

Cynefin Copyright:

War
https://commons.wikimedia.org/wiki/File:Cynefin
_as_of_1st_June_2014.png A B

Cause Effect

Simple causality
Inspired by Boone ME. A leader’s framework for decision making. Harv Bus Rev. 2007;85(11):1–9.

Figure 5: The four areas of complexity theory adapted from: [69]

Briefly, complexity theory sets out four areas of increasing complexity in

terms of the cause-effect relationship (see Figure 5) [69–71]:

•• Simple events: events with a known linear relationship between cause

and effect. Example: Treatment for cardiac arrest is Cardio-Pulmonary
Resuscitation.
•• Complicated event: The nature between cause and effect is known but
dependent on other factors that can be illustrated with a “flow-chart.”
Experts train to detect the decision points and their dependencies Eg.
chemotherapy X for cancer Y, will not work if the patient suffers from
kidney failure.
•• Complex events: the cause-and-effect relationship are multiple and un-
clear, although several areas linked to the outcome may be known. There
may be multiple cause-event steps within a cause-event chain involving
multiple interconnected self-organizing independent units that respond
to inputs according to local logic. Change management starts by using
available theory and experience to hypothesize how the system works,
formulate ideas on how to change the system, and then trial the potential
solution(s) iteratively and observe effects. Judgment about what works
and why will be based on a reflective evaluation of the theory and ob-
servations. Example: We know that all parents seek food, shelter, safe
environments, schooling, playmates, etc., for all children, but in different
measures and patterns for each child. Parents will iteratively observe,
respond and adjust to the challenges that occur for each child.
34 Person-Centred Care Systems: From Theory to Practice

•• Chaotic events: The cause-and-effect relationships are unknown and

unknowable. Managing a chaotic situation is all about stabilizing bits of
the system so that these sub-parts can be brought back into the realm of
complex and complicated. Example: War, where the contributing agents
are de-stabilizing and unpredictable, with resulting catastrophic instability.

All four types of cause-effect relationships exist in healthcare, but simple and
complicated approaches are the most common in clinical work. However,
complex approaches are probably more apt in many situations. Chaotic situ-
ations typically occur in catastrophes, where all of society may need to step
up to manage the situation.

Systems thinking – a systematic approach to change

in CAS
Closely linked to CAS is systems thinking, which

“…is a set of synergistic analytic skills used to improve the capability of identifying
and understanding systems, predicting their behaviors, and devising modifications
to them in order to produce desired effects. “ [1]

Systems thinking provides us with the following general leverage points:

“Places to Intervene in a system (in ranked order of effectiveness)

1) Transcending paradigms
2) Paradigms: The mindset of which the system, its goals, structure, rules,
delays, and parameters arise.
3) Goals: The purpose of the system
4) Self-organization: The power to add, change or evolve system structure
5) Rules: Incentives, punishments, constraints
6) Information flows: The structure of who has and does not have access
to information
7) Reinforcing Feedback loops: The strength of the gain of driving loops
8) Balancing feedback loops: The strength of feedback relative to the
impacts they are trying to correct
9) Delays: The lengths of time relative to system changes
10) Stock-and Flow structures: Physical systems and their nodes of
intersection
11) Buffers: Sizes of stabilizing stocks relative to their flows
12) Numbers: Constants and parameters such as subsidies, taxes, and
standards. “[44]
 Chapter 5 – How do we make PCC the norm? 35

Using these tools to analyse health care, first comes leverage points 1–3, which all
focus on the explicit verbalization of the paradigms that underpin health care’s “rai-
son d’etre.” What is the overarching goal of the system? Mental models are often
so deeply embedded in our minds that we do not question or even verbalize them
because they seem self-evident. Previously, we described the new PCC mental
model (see Chapter 3), as changing from a health care service for professionally
defined goals, to one that serves the patient’s goals.

To apply a PCC mental model, it must guide the design of the other structures of
the care system, including their “…interconnections, the understanding of dynam-
ic behaviour, systems structure as a cause of that behaviour, and the idea of see-
ing systems as wholes rather than parts”[1]. Five core structures make up every
national health care system:

1. The organizations that make up the health care system, including the differ-
ent agents that share health care labour across complementary roles and
tasks. They consist of humans, professions, organizations, and levels of care.
2. The laws and regulations define the organizational units, roles, and boundaries.
3. The information systems that support information flow among the agents.
This includes both analogue and digital information flow.
4. The funding and incentive systems that motivate or restrain behaviour in-
clude monetary incentives, quality indicators, and other less transparent fac-
tors, such as cultures and traditions.
5. The educational and research systems that produce knowledge, educate, and
train professionals in the theory and skills of the health and care professions.

These five structures each consist of agents that are, to some extent, self-
governing agents. All humans in the system, from the top-level managers of a
hospital to the assistant nurse, have some level of self-agency. They can choose
how to carry out a task or an expectation within the constraints set by the system
structures. Changing the mental model to PCC, educating, incentivizing, facilitat-
ing, and trusting them to do the right thing, makes change happen. When they
meet conflicts, resource scarcity, and barriers, listening to these agents is per-
haps the most important feedback loop. Listening to the patients and their experi-
ence of how the system works is another feedback loop in the service of patient
defined goals.

Going through all the system structures with PCC in mind is the next step. If we
are also interested in hard outcomes, it is essential to consider the associated
implications of PCC: integrated and pro-active care. It is a PCC, integrated and
proactive care process that improves outcomes.
Table 2 below identifies Key areas for consideration in the PCC care system. This table is not meant to be exhaustive, nor is it
final. It gives an example of how it is possible to break down the overarching goal of PCC into separate areas of focus, which
each require activities for change.

Table 2: Key areas for consideration in the PCC care system

Goal Care Delivery Legislation and Incentives and funding Information Education and
Organizations regulations systems systems research
PCC Build and embed PCC Review expectations of Patient value evaluation, Recording Teach PCC and
into the culture, including patient value evaluation both qualitative and patient goals are health care systems
the patient journey as a at individual and group quantitative, are linked to mandatory in health knowledge
mental model of the care levels. incentives. documentation
Identify valid and
delivery
Make care safety a Link incentives to Build patient reliable ways to
Review the patient system responsibility patient goals and patient journey measure PCC and
journey, focusing on the based on learning from experience in the patient documentation depersonalization.
“WMTY?” question, the adverse events. journey. across professions
Special focus on
handovers, and the self- and organizations
Patients are by default building knowledge
36 Person-Centred Care Systems: From Theory to Practice

management and care

in charge of their health Ensure about the experiences
delivery through the lens
care data and decide transparency and and needs of
of the patient experience.
with whom to share information sharing marginalized
Educate and support across organizations. across the patient and vulnerable
shared decision-making Exceptions are made journey. populations.
and co-production with to accommodate
Collect patient Make innovation
patients. emergencies and
feedback on “what projects together with
situations where
matters.” Care and Information
patients cannot take on
systems.
this responsibility.
Goal Care Delivery Legislation and Incentives and funding Information Education and
Organizations regulations systems systems research
Establish measurements
and observations of
both achievements of
PCC and the threats
to PCC, such as
depersonalization,
emotional burnout, and
transactional care.

Review the patient

experience of
marginalized and
vulnerable populations.

Work with Research and

education to innovate
care delivery towards
PCC.
PCC ⇒ Build awareness on According to patient Bundling of payment for ICT-Tools for Educate all health
Integrated patient journey quality for wishes, ensure the complex patient groups teamwork: professionals about
care persons with complex free flow of information across organizations, the division of labour
Proactively identify
and long-term needs. to all relevant parties. where the organizations and roles in complex
high-need and high-
share incentives and patient journeys.
Educate and support cost patient groups
penalties according to
teamwork.
patient journey outcomes.
Chapter 5 – How do we make PCC the norm? 37
Goal Care Delivery Legislation and Incentives and funding Information Education and
Organizations regulations systems systems research
Establish a culture for Allow pro-active Explicit funding for Collect patient Innovate and analyze
shared plans and support identification of “shared practices” – i.e. feedback on the the effects of
for the following link in patients with complex coordination activities that discontinuity of care teamwork and shared
the care chain. and long-term care take time and expertise. work practices.
needs.
PCC ⇒ Systematic self- Allow proactive Bundling of payments, Provide digital Education: Build
Proactive management support in identification of threats especially for high-cost, self-management individual-level risk-
care areas of health literacy, to “what matters” and high need patients. support wherever management into
self-efficacy, and skills active management possible. professional practices
training. of those threats Improve identification
Include sensors
through monitoring of high-cost, high
Establish low-threshold and self-reported
risk factors, alarms, need groups with
professional support in experience, risk,
and action plans. effective broad
case of emergency for and outcomes data
Especially important interventions.
high-risk patient groups. in documentation.
for vulnerable
Research how to
and marginalized Provide automatic
38 Person-Centred Care Systems: From Theory to Practice

recognize patients
populations. alarms of increasing
who will benefit from
risk, coupled with
specified proactive
decision support.
care programs.
 Chapter 5 – How do we make PCC the norm? 39

In complex systems, common to all change management is a goal-setting activity,

followed by a plan–do–study–adjust cycle adapted to the local situation, in line with
Deming’s quality improvement theory. In the planning phase, we would encourage
special attention to:

•• Identification and naming of important structures and interconnections and ex-

amining gaps between the current way of operating and a PCC vision. What
are the gaps, and how do they matter? This is a critical phase where the agents
who need to change would be invited to identify overarching system goals and
the smaller pragmatic goals that are within reach.
•• The information flow (regulatory signals) that allow self-organizing units to
adapt their activity to their local purpose and overarching system goals are
core to change management. Information flow should have a supporting and
enabling role, not a controlling function.
•• Building self-organizing capacity means that the units that enact and support
PCC should be trusted, educated, supported, and encouraged to invent their
approach toward the overarching common goals. Building capacity for local
action requires an explicit dismantling of shaming and blaming cultures and a
building of committed cultures that can risk a trial-and-error approach. Without
errors – no learning occurs. Fail fast and small and use it to learn and adjust
the approach.
•• Create feedback loops that reflect the mental model that documents and
guides the self-organizing units. Failures or setbacks are learning opportuni-
ties. Feedback loops are tools that can be linked to incentives and disincen-
tives to guide the system in the desired direction.

We stress the importance of seeking out patient journey experiences at every turn.
Creating many ways of listening to patients and their experiences to understand
how their journey helped them manage and improve their health to support their
“What matters” in their lives. Listening to the patient’s voice can be quantitatively
reaching out to many patients and qualitative explorations of specific patient jour-
neys. Invite patient and caregiver collaborators onto improvement teams to con-
tribute their broader system insights from firsthand experiences and observations.
Spending time reflecting upon and learning from concrete patient experiences is
a meaningful and effective motivator for change across the care system. Do not
forget to think in journeys that span the system instead of silo experiences. It is the
chain of care that produces the final result.

Beware that there are systems within the systems and that system borders are in-
herently indistinct. Also, regulatory signals are not only “official” because they are
explicit and transparent in the public domain. “Invisible” regulatory signals reside
in culture and traditions, family values, or personal history and may influence how
a person or an organization might choose to act.
40 Person-Centred Care Systems: From Theory to Practice

The PCC – language and information flow

Building a PCC information flow requires attention to our concepts and language
for PCC. The words are not new, per se, but are currently not part of documen-
tation and regulation signals in the system. The following three concepts will be
central to feedback loops (see also Fig 6):

•• The person – the identity and the person’s narrative, explains and supports
“what matters” and why. Putting words to identity prevents professionals
from making the error of ignoring the person in the patient. Making it more
personal introduces a level of humanity into the interactions that protects us
from treating each other as “mechanics.”
•• The “what matters” to the person and its translation into “relevant goals”:
This drives decisions in the patient journey and is the basis for evaluation of
the journey. Careful documentation of “What matters” directs prioritization
and tailoring of the PJ.
•• The patient journey is the plan and the actual delivery of care that should ideal-
ly embed “what matters” as an outcome and reflect strong self-management
as the core of the care process. The patient and professional co-create the plan
and its delivery so that journey is meaningful, feasible, effective in reaching its
goal, and as comfortable for the person as possible. The PJ documentation
may include a patient journey narrative as part of the history and the patient
experience feedback. The care plan, seen from the patient perspective, should
outline who does what when for all the patient’s conditions and should also
document what has already been delivered and what is upcoming. Suppose a
critical element was not executed as planned. In that case, this fact should also
be documented, together with a review of why it did not happen and how to
re-establish continuity with the PJ.

Figure 6: The Person, the Journey, the Goal

 Chapter 5 – How do we make PCC the norm? 41

The feedback loops

The revised system’s logic should support professionals in creating person-
centred, integrated, and proactive care.

The feedback loops do not have to be linked to formal incentives to work. Providing
timely and specific information may be enough to support change. At this time, we
have little experience on how directive the feedback loop process should be, as
there is empirical evidence of both effects and side effects following the introduc-
tion of technical quality indicators [72], PROMs, and PREMs in funding algorithms
[73]. It is also important to remove disincentives to PCC, i.e. regulations that im-
pose cost penalties on delivery of PCC.

Measurement and observation are not done for their own sake but as a guide
to change management. Without measurement or observations, those responsi-
ble for processes are “blind” to their progress. If evaluation and observation are
to make a difference, they must identify the relevant care situation and provide
meaningful feedback to those responsible. Also, if measurement is to be taken
seriously by the evaluator, e.g. a patient, the act of evaluation must be intuitive,
non-ambiguous, not overwhelming, and it must make sense to everyone. The
transparent use of the measurements should not harm or penalize the evaluator.
This will immediately be a reason for “gaming,” i.e., changing the evaluation to
minimize harm to oneself.

The chain-of-care that makes up a patient journey poses a challenge in obser-

vation and measurement for feedback. Although it does make sense to evaluate
each link in the chain of care separately, the final result for the patient is also highly
dependent on how all links work synergistically together. At the same time, feed-
back should provide insights relevant to the specific organizational or profession-
al agents that contributed. Thus, feedback from patients on their patient journey
experience requires both a look at snapshots along the way and the journey in its
entirety. Finally, it is interesting to learn if the journey met its original goal. Several
instruments are relevant for snapshot-evaluation of shared decision making in the
consultation [74] and the patient’s experience of the consultation [75–77], but not
so many that review the patient experience of the chain of care or patient journey
[25]. We believe that the patient narrative might be an important way to review the
entire journey, especially in complex cases [78].

Continuous goal assessment: Evaluation of goal attainment is important to learn

and adjust the journey along the way. The evaluation is either done by the patient
alone or by the patient and professionals together [79–82]. There are some strict
formal ways of doing such evaluations, where the expected functional outcomes
and timing for the evaluation are defined ahead of time [83][84]. Other evaluations
42 Person-Centred Care Systems: From Theory to Practice

simply record the patient-defined health issues at baseline and then evaluate prog-
ress on these measures at follow-up [85–87][82, 88]. The goals and their attainment
can be recorded both in a narrative and a quantitative way. The quantitative eval-
uation is easy to aggregate up to group levels. The narrative review is performed
by the patient and professional and informs the continuous adjustment of the care
process. The aggregate values are anonymized and inform decision-makers [89].

Transparency and trust

The joint patient-professional review of the PJ, of both PCC and technical quality,
turns the evaluation into actionable learning points. The more concrete, the more
open and the closer in time, the more valuable and enlightening the evaluation
will be.

Please note that the feedback loop needs transparency and openness to succeed.
Only when the patient experience is honestly reported and coupled with an open
and non-judgemental professional reflection will the evaluation generate direction
for improvement at both individual and system levels. To facilitate such honesty, it
is imperative that neither patient nor professional fear the review. Patients have re-
ported that they feel vulnerable and are afraid of being punished by their providers
should they express openly critical comments [90]. Likewise, professionals have
reason to be wary of evaluations that could uncover errors and failures that might
exact penalties [91]. To support safety and learning, any critical feedback from any
source should be applauded as a valuable source of learning.

Creating the safe generous, trusting, and open atmosphere needed to make feed-
back a constructive exercise is vital. It is necessary to construct a review process
that builds on, strengthens, and protects trust to enable true learning. The process
should effectively shield both parties from any potential negative consequences.

Here are some examples of doing this:

Group-level aggregation of patient feedback and experiences, where patient and

professional identities remain anonymous. Such feedback works best if they re-
flect directly back on a known entity and time.

Individual review: Review an individual patient journey, as recorded in the health re-
cord and patient-reported material, by a professional or board of professionals who
were not involved in the patient journey and know neither patient nor professionals.

Patient stories: Collections of patient narratives of their PJs or sections of their

journeys. The patient may or may not be anonymous. The patient interviews should
 Chapter 5 – How do we make PCC the norm? 43

be conducted by someone not part of the provider team, such as a researcher or a

patient-partner. The organization shares the story to foster reflection dialogue and
inspire improvement [92, 93].

Continuous formative dialogue: The professionals encourage patients to provide

direct feedback for improvement but do not aggregate or report the feedback to
the system. Some professionals use formal validated tools for feedback [94][95].
Others simply establish the feedback loop as part of each consultation. This ap-
proach is useful when there is continuity across providers but may be less valuable
in a setting with many professionals working independently.

Digital tools for PCC

The role of creating supportive information systems for the transformation toward
PCC can not be underscored too strongly. Information tools that document and
display the person, the “WMTY?” and the PJ care plan and delivery are key tools
for both patients and professionals to succeed. The information necessary to con-
struct the patient journey includes sharing goals plans, designing workflow, and us-
ing health data analysis for risk management. Evaluation at the individual and group
level guides managers and allows linkage of incentives to positive achievements.
Although simple PJs can be supported by analogue information flow, this will not
suffice for a growing group of multi-morbid patients with complex and long-term
needs. Digital support designed to support PCC systems will play a central role in
reaching strategic targets for our care systems. The WHO has declared that digital
health is essential for reaching their policy goals [96]. The WHO underlines that
digital health may support universal coverage, especially through cost-containment
and wider geographic access to health care information and decision support.

While digitalization lowers the threshold and improves accessibility to care for
broad population groups, it may also increase barriers and hamper access for oth-
ers. The older citizen who is not a digital “native,” the cognitively impaired, and the
person without financial resources to obtain digital tools and internet access are
all at risk. Using analytic tools to spot inequities that arise from digitalization and
addressing these are necessary [97]. There will always be a need to maintain face-
to-face and analogue services at the population level to ensure access and quality
for those who can not use digital support tools.

Ideally, the patient journey documentation should be accessible and even owned
by the patient, not just as a “rhetoric.” The patient should be supported with digital
tools to see, monitor, add to and decide who to share their data with. Exceptions
for non-consensual access to data for legitimate reasons, such as emergencies or
44 Person-Centred Care Systems: From Theory to Practice

cognitive impairment, can co-exist with strong patient ownership of data. Zanaboni
found that patients who accessed their digital information have found:

“Clinical advantages to the patients included enhanced knowledge of their health con-
dition (565/691, 81.8%), easier control over their health status (685/740, 92.6%), better
self-care (571/653, 87.4%), greater empowerment (493/674, 73.1%), easier communi-
cation with health care providers (493/618, 79.8%), and increased security (655/730,
89.7%). Patients with complex, long-term or chronic conditions seemed to benefit the
most.”[98]

On paper or in digital format, information systems that provide tools to document

and review the patient journey are key to moving from fragmented profession-
centred reactive and episodic care to person-centred, integrated, and pro-active
PJs. Making the PJ tangible allows us to answer questions such as: What do PJs
look like? How can we link funding to PJs? How can we evaluate PJs in terms of
both technical and PCC quality?

Today’s electronic health care records and digital health care tools reflect the frag-
mented professional organizations they were developed for. The organizational de-
mands for documentation and administration of patient data dominate EHR func-
tionality.

The next generation of digital tools should be designed for the new mental model:

“What matters to you?” People do not necessarily have a ready answer to the
question, “What matters to you?”. Digital tools can support persons in developing
and sharing their narrative and sense of identity and life projects. Persons can find
tools to create an overview of the critical areas for their health and well-being, pro-
viding an account of their strengths, needs, values, and preferences, and sharing
that effectively with the care professionals that work with them. Digital Shared
Decision-Making tools educate and support the co-production of critical decisions
in disease-specific care pathways. Health information sites are invaluable to citizen
health literacy and empower the patient to understand their condition, how it is
treated, and the prognosis. Digital access to their electronic health record helps
patients understand their care and revisit the chosen decisions and strategies. Dig-
ital feedback from patients regarding how well professionals involved them in their
care, including relevant PREMs and PROMs, is also part of the digital toolbox for
PCC.

Integrated care: The PCC plan is also an integrated care plan. However, the con-
tinuous update of the shared care plan is challenging to maintain with analogue
tools alone. Diagnosis-specific and evidence-based care plans are the basis for any
care plan and will often be sufficient for single disease pathways. However, when
 Chapter 5 – How do we make PCC the norm? 45

there is more than one diagnosis, the digital tools should support merging diagno-
sis plans into personal plans. It is essential that the resulting digital care plan be
shared with all contributors, including agents outside of the health service such as
the patient, the significant others, social services, and schools.

A shared care plan serves many functions as it provides all parties with an over-
view of goals, roles, and tasks. It shows what is planned and what has already
been delivered. It provides an update on evaluations made by the patient. It is an
arena for synchronous and asynchronous team communication, which helps the
team stay updated and react to changes or unexpected developments. Workflow
optimization tools may help organizations translate patient-care plans into employ-
ee workflow. Care process monitoring could secure the care system’s compliance
with the care plan and alert the relevant professional if critical services were not
delivered, as planned.

Proactive care: In PCC, the patient stays informed and is as active as they desire
to be. Risk management is systematic and planned. The digital tools for support-
ing self-management range from providing information to guidance for self-care.
Examples include diet and exercise apps and diagnosis-specific apps, such as di-
abetic blood sugar control apps. In risk management, wearable sensors can help
monitor risk factors to support early interventions, such as weight increase in heart
failure patients or infection risk in COPD patients.

It is outside the scope of this text to review rapidly emerging opportunities for the
digital support of PCC care, but note that digitalization is a central tool that, when
adopted with care, can support the goal of PCC.
Chapter 6 – Concluding remarks on
PCC

PCC is an intentional system design feature. Above, we have outlined the general
principles of the PCC system, mainly for the frontline. The system transformation
needed to make change happen must be translated into concrete actions. We do
not claim that this is an exhaustive overview of all areas that need attention. Still,
we hope our content might inspire other authors to take up the challenge to im-
prove and expand on this outline of facets of care systems and practices that need
examination when re-designing care for PCC.

It is beyond the scope of this text to offer further detail on how to generate the
system-level changes needed to achieve PCC. The general principles that lead to
success will still need to be tailored to local contexts, considering local culture,
traditions, history, resources, and current practices.

The current profession-centric care system was built with the best of intentions.
To reform our care systems, we must build on its strengths, keep the profession-
alism, but redirect its goal. It will not be easy. It will be hard work, and it will take
time. We believe it is worth it. The rewards are improvements in all the quadru-
ple aims: Improved patient experience, improved health and function, improved
cost-benefit, and improved professional experience.

Care professionals are “visitors” in the patient’s life. The patient is the host, guide,
and enabler of the healing journey. The care system’s goal is to enable the person
to thrive in their life with as little support from health care as possible.
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Figures & Tables

Figure 1 – Page 15 – Patient-System meeting

Figure 2 – Page 16 – The Iceberg Model, Monat, J.P. and T.F. Gannon, What is
systems thinking? A review of selected literature plus recommendations.
American Journal of Systems Science, 2015. 4(1): p. 11–26.

Figure 3 – Page 17 – The visible events of the health care system: The patient
journey (PJ) arises at the intersections between the professionally defined care
pathways (red) and the personal life pathway (blue) of the patient. The payer/
regulator is an invisible but omnipresent partner, shaping the PJ through funding
and regulations

Figure 4 – Page 21 – The new mental model: The overarching goal of the care
system is to improve and maintain health, understood as a resource for “what
matters” in the life of patients. Professionals serve “what matters”. The system
level, serves professionals.

Table 1 – Page 22 – The role changes that will ensue from a PCC mental model

Figure 5 – Page 33 – The four areas of complexity theory adapted from Snowden,
D.J. and M.E. Boone, A leader’s framework for decision making. Harvard business
review, 2007. 85(11): p. 1–9.

Table 2 – Page 36 – Key areas for consideration in the PCC care system

Figure 6 – Page 40 – The Person, the Journey, the Goal