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2nd

2017

WORKING TOGETHER ACROSS
BORDERS AND PROFESSIONS
TO IMPROVE THE LIVES
OF WOMEN WITH mBC

2017

2nd

2017

WORKING TOGETHER ACROSS BORDERS AND PROFESSIONS
TO IMPROVE THE LIVES OF WOMEN WITH mBC

SUMMARY
At the 1st MBC Summit in 2016, communication between
healthcare professionals and patients emerged as one of the
most important areas for action to improve the situation for
women with mBC worldwide. One year later, the 2nd MBC
Summit brought together a multidisciplinary group that
developed recommendations for medical guidelines:
the PALiMo Recommendations.

“The MBC Summit is a benchmark. Bringing interdisciplinary
circles together to enhance communication – that’s how we’ve
worked here, that’s how we can do it. And I haven’t often been
on conferences where this has really been the case.”
Carole Farrell,
oncology nurse from England

3

FOREWORD

HIGHLIGHTS

“The message we have sent across the mBC community at
the first MBC Summit was that change is best achieved when
we work together – across borders, across professions. This
multidisciplinary approach is key.
It was and will be Pfizer’s commitment to work in close
partnership with patients to find solutions that improve the
situation for women with mBC. The 1st MBC Summit in 2016
was one example of these collaborations: together, patients,
doctors, oncology nurses, patient advocates and psychooncologists developed a Position Paper that called for action
in important areas affecting the everyday lives of women
with mBC, among these – communication between patients
and healthcare professionals.
The 2nd MBC Summit built on that. I was proud and
impressed to see even more patients, patient advocates and healthcare
professionals from 26 countries around the world following our
invitation to come together to drive change for women with mBC. That
is a most remarkable and inspiring feat: within two days, they proposed
the PALiMo Recommendations, suggestions for medical guidelines to
close existing gaps in the communication between women with mBC
and their cancer-care teams.

The 2nd MBC Summit....................................................................................................................................6
Metastatic Breast Cancer........................................................................................................................ 8
Building on the 1st MBC Summit......................................................................................................10
Guidelines and How They Influence HCP–patient Communication.........12
Work Process.....................................................................................................................................................15
Results: The PALiMo Recommendations..............................................................................16
•How to ensure information is understood..........................................................................................18
•How to ensure that communication is effective and open..............................................20
•Patient preferences, values and needs..................................................................................................22

What Happens Next? ..............................................................................................................................25

My heartfelt thanks to each and every one of you, and to all the
people within the mBC community who were and will be a part of
this initiative. Let us use the inspiration and the new connections we
have made in Vienna to take the PALiMo Recommendations into local
mBC conversations around the world. They are our chance to make a
contribution towards a better future for women with mBC.
I look forward to continuing our joint efforts in 2018.”

4

Prof. Dr. med. Markus Kosch,
Vice President Commercial Portfolio Management,
Europe, Japan & Developed Asia, Pfizer Oncology

5

THE 2ND MBC SUMMIT
Working for change across borders and
professions – for patients, with patients
“It’s a team effort,” Ireland-based oncology nurse Naomi Fitzgibbon
said of the 2nd MBC Summit. And indeed it was: a multidisciplinary and
truly international group joined forces in Vienna to exchange ideas,
learn from and inspire each other. The common goal of the 80 patients,
patient advocates, oncologists, nurses, psycho-oncologists and
Pfizer representatives was to make a difference in the lives of women
with metastatic breast cancer (mBC) by contributing to improving
communication between them and healthcare professionals (HCPs).
The topic was defined by last year’s 1st MBC Summit as one important
area where change is needed. Although general guidelines with
advice to HCPs do exist, there is a lack of concrete and specific
recommendations on what constitutes good communication and how

“It is very important to share
opinions between professionals
and patients because it means we
will all win.”

it can be achieved. Through workshops and discussions, the group
defined three themes for which they have proposed recommendations:
information and understanding, effective and open communication,
and patient preferences around values and needs. “I was happy to
welcome even more participants than last year, from even more
countries – 26 in total,” says Christina Claussen, Director Alliance
Management & Patient Relations Pfizer Germany. “The MBC Summits
we’ve hosted have become a platform for exchange and alliance for all
of them, patients and healthcare professionals alike. We see ourselves
as a reliable partner, because in our daily work, we come across
the challenges women with mBC face every day when we talk with
patients, patient advocates and HCPs. The MBC Summit is part of our
holistic approach to tackling these issues, and our contribution beyond
the pill. Coming together to improve communication between all
parties involved, like we did this year, was simply the next logical step
in our long-term collaboration.”
The networks that are built during the MBC Summit can help drive
change: “We all felt inspired by each other, and that’s the way to go.
We can’t drive change on our own,” said Luzia Travado, a psychooncologist from Portugal. What is the biggest challenge now? “We
need each of us to endorse what we’ve done here,” she added. “To
empower ourselves. Bring it into our associations, our networks, to
create coalitions, ties within our countries to become stronger. It’s up
to us. Pfizer was the facilitator – it’s not their task, but ours.”

Ana Casas, oncologist from Spain
“Behind every doctor, every
patient is a person. That’s what
makes recommendations for
guidelines so difficult, because
every individual is different.
Don’t expect 100%. We’ll make
progress step by step.”

“Good guidelines, in my opinion,
should have a large group of stakeholders.”
Daniel Kalanovic,
Senior Director Medical Affairs, Pfizer Oncology IDM

Doris C. Schmitt, patient advocate
from Germany

6

7

METASTATIC
BREAST CANCER
Communication between patients
and healthcare professionals
Facts and figures

• 44% of patients do not tell their healthcare providers
about their goal for therapy5

• Metastatic breast cancer means that the cancer has spread
beyond the breast to other organs1

• 65% of end-of-life discussions are held too late,
after multiple changes of treatment5

• Median survival has remained for many decades at two to four
years after diagnosis2

• It takes an average of three discussions with their oncologists
before patients with mBC have a clear understanding of the goals
of therapy, according to estimates by healthcare professionals5

• Approximately one-third of women initially diagnosed and
treated for earlier stages of breast cancer will eventually develop
metastatic disease3

• Only 43% of healthcare professionals report having received
training on how to break bad news to patients and their families5

• It is estimated that 561,334 breast cancer deaths occurred
worldwide in 2015, primarily from mBC. By 2030, the number of
deaths is estimated to reach 805,116, representing a 43% increase
in the absolute number of breast cancer deaths4
“Why am I so passionate about
improving communication
between HCPs and patients?
Because of the experiences I’ve
made myself. I’ve been told that
I had a malignant tumor between
doors, without any empathy, let
alone privacy. Now, I’m working
to put patients into focus, to
make sure their voices are heard.”
Doris C. Schmitt,
patient advocate from Germany

8

“When I started as an oncology
nurse forty years ago, patients
were often left in the dark about
the reality of their disease. Now,
they’re more aware, they want to
be better informed and part of the
decision-making process. That’s
partly because women stood up
and said: We want to be treated as
partners, as people! And we want
to play an active part.”
Lynda Pyle,
oncology nurse from England

9

As oncologists and oncology nurses already play
a huge role in the lives of women with mBC, the
group believed they could be important partners in
this effort. With this idea the MBC Summit was born
– bringing together patients, oncology nurses and
oncologists to share their visions for a brighter future
for women with mBC.

BUILDING ON THE
1ST MBC SUMMIT
The MBC Summit:
facts and figures
• 1st MBC Summit 2016 in Madrid: 52 attendees from 22
countries – five physicians, 13 nurses and 34 patients
• 2nd MBC Summit 2017 in Vienna: 58 attendees from 26
countries – one oncologist, one gynaecologist, two
psycho-oncologists, four oncology nurses and 50 mBC
patients and patient advocates
• In 2017, for the first time, participants from Croatia,
Denmark, Macedonia, Norway and the USA

At the 1st MBC Summit, over fifty patients, advocates,
doctors, and nurses shared their expert perspectives.
They published a Position Paper on three core areas:
• Improving doctor–patient communication
• Changing the public perception of mBC and
maximising the visibility of mBC in the media
• Integrating the patient perspective into health policy

“We want the same
thing. We’re not the
good guys, nor are they
the bad ones. But we
don’t speak the same
language. They speak
‘doctor’, we speak
‘patient’. So we, as
patients, need training
as well. It’s not just for
them, it’s us together.”
Catherine Ubaysi,
woman with mBC
from France

Doctor–patient communication emerged as one
of the most important areas for action because:

“Gaps have to be closed,
especially in mBC.
So we wanted to do more,
to improve on what we have
already developed.”
Doris C. Schmitt, patient
advocate from Germany

“We are moving forward, we’re
moving ahead, and we’re improving
every time.”
Nicole Zernik,
patient advocate from France

The idea for the MBC Summit emerged from a committed
group of patients and patient advocates, known as the
Every Day is Precious group. These women meet with
representatives from Pfizer Oncology twice a year to
share the challenges that they and other patients face,
and to identify ways to improve the lives of women with
mBC. These meetings are based on the idea of co-creation
supported by Pfizer: by patients, for patients.

10

However, to ensure patient views are considered in all
aspects of mBC support, merely communicating amongst
each other would not be enough – the support of a broader
audience was needed.

• Conversations between a doctor and an mBC
patient are challenging; they often occur
during very emotional situations
• The playing field is uneven. Healthcare
professionals have detailed scientific
information that patients are not privy to. Patients,
on the other hand, are experts in their own personal
circumstances – their emotional wellbeing, their support
networks, their priorities
• Targeted therapies are an important medical opportunity, but
they also make conversations more complex for both sides
• Other objectives mentioned in existing guidelines
can only be achieved in accordance with effective
communication
Thus, the objective of the 2nd Summit was to
supplement the existing content by adding concrete
recommendations on how to communicate.

11

A Global Call to Action
The MBC Summit aims to address some of the key unmet
needs raised in the “Global Status of Metastatic Breast Cancer
2005-2015 Decade Report”, a research report commissioned
by Pfizer and the European School of Oncology (ESO), under
the framework of the International Consensus Conference
for Advanced Breast Cancer (ABC).5 The report is based on
primary research with patient support organisations, healthcare
professionals and the general public. Following the research, a
Global Call for Action has been developed to address the findings.
The MBC Summit complements this research by incorporating the
practical, first-hand experiences of those on the front line in the
mBC community. You can find out more about the research and
the MBC Vision Call to Action at: www.breastcancervision.com

BACKGROUND
GUIDELINES
Guidelines and how they
influence HCP–patient
communication
Prior to the 2nd MBC Summit, the following high-profile
guidelines were reviewed:
• ESO-ESMO 2nd International Consensus Guidelines for
Advanced Breast Cancer (ABC2)6

While all of them emphasise the role of HCP–patient communication, the
detail and depth of recommendations differ, and many guidelines remain
vague regarding concrete advice on how to communicate effectively and
to the benefit of all parties involved
Three core areas stood out as the foundation for good HCP–patient
communication:
• Information and understanding: All ABC patients should be offered
comprehensive, culturally sensitive, up-to date and easy-to-understand
information about their disease and its management6,7,8,9
• Effective, open communication: Effective, open communication between
patients and their cancer care teams is a primary goal of discussions to
facilitate shared decision making6,7,9
• Patient values, needs and preferences: Patient preferences, values
and needs should always be taken into account for optimal cancer care.
Patients should be encouraged to be proactive in their care and to share
decision-making with their healthcare providers6,7,8,9
These topics formed the basic structure of our recommendations and
guided discussions and workshops throughout the 2nd MBC Summit.

“For healthcare
professionals, you need
to put recommendations
into their treatment
guidelines.”
Luzia Travado,
psycho-oncologist
from Portugal

“In guidelines, we can read about the ‘what’,
but not about the ‘how’. When a guideline
says ‘Doctors have to address palliative
care’, I ask myself: How? When?”
Doris C. Schmitt,
patient advocate from Germany

• ESO-ESMO 3rd International Consensus Guidelines
for Advanced Breast Cancer (ABC3)7
•E
uropean Oncology Nursing Society (EONS):
Breakthrough Cancer Pain Guidelines8
12

• American Society of Clinical Oncology (ASCO):
Assessing Patient-Centered Communication in Cancer Care9

13

WORK PROCESS
What are guidelines?
Medical guidelines exist in various formats; they are issued by
different medical associations worldwide. Generally, guidelines
“are designed to support the decision-making processes
in patient care. The content of a guideline is based on a
systematic review of clinical evidence - the main source for
evidence-based care.”10
Guidelines can have various purposes, e.g. describing
appropriate care based on the best available scientific
evidence and broad consensus, providing a focus for
continuing education or acting as focus for quality control.10

Following several panel discussions during which attendees had the
opportunity to learn about the different guidelines and debate different
points of view from the various fields of expertise, participants continued
working in interdisciplinary groups (patients, physicians, nurses) to
discuss the three topics as outlined in the guidelines.6,7,8,9
Two moderators guided participants through workshops to debate each topic
individually and make suggestions as how to tackle the gaps within each:
• Information and understanding: oncology nurse Lynda Pyle and
patient advocate Nicole Zernik
• Effective, open communication: patient advocate Doris C. Schmitt
and gynaecologist Friederike Siedentopf

“In an ideal world, guidelines
should inform a physician about
the standard of care regarding a
certain disease. Guidelines define
the standard of care. They’re
not the same from country to
country, their scope and updates
vary too. Some mention how to
communicate, some don’t. The
bottom line is: it’s not enough.”
Daniel Kalanovic
Senior Director Medical Affairs,
Pfizer Oncology IDM

14

• Patient values, needs and preferences: patient advocate Eva
Schumacher-Wulf and psycho-oncologist Lucia Travado
After all ideas were consolidated, outlined and discussed among
all participants together, all MBC Summit participants reviewed
the final, agreed-upon positions and signed their name on a
giant position wall to show their support for these calls to
action to improve the situation of women living with mBC.

“Collaboration strengthens guidelines. They’re
important because they set the standard of care
a patient can expect. But there’s always room for
improvement. As a nurse, I use guidelines to prepare
patients for doctors’ appointments. This information,
however, has to be tailored to the individual patient.”
Naomi Fitzgibbon,
oncology nurse from Ireland

15

RESULTS
Recommendations developed at the 2nd MBC Summit:
PALiMo – Prepare, Ask, Listen, Motivate
The recommendations on communication between healthcare
professionals and patients are based on four principles that should be
the foundation of every communication between HCPs and patients:
Prepare – Ask – Listen – Motivate. In short: PALiMo.
The PALiMo Recommendations were summarised and agreed upon
by all participants who were present at the 2nd MBC Summit. They can
accompany the patient and HCP during their joint conversations along
the patient journey.

The PALiMo Recommendations

16

P

Prepare the consultation in advance

A

Ask the patient if they have understood explanations and whether
they agree regarding next steps

Li

Listen to find out if the patient has any concerns or questions

Mo

Motivate and encourage patients for the long patient journey
together

“ I anticipate the conversation and try to have everything ready – results etc.
And I set up the scene, put off the phone, make sure we’re not disturbed,
tell the patient to bring a close friend...”
Friederike Siedentopf,
gynaecologist from Germany

“ ‘Ask before you tell’ is
so important. Otherwise,
I’m just pushing my own
agenda.”

“ To listen to a patient is
the main point, because
patients are our best
teachers.”

Luzia Travado, psychooncologist from Portugal

Ana Casas,
oncologist from Spain

“ Conversation, however difficult, needs to end on a
positive note. I want to make sure the patient leaves
with positive thoughts instead of just sadness.”
Lynda Pyle,
oncology nurse from England

17


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