oncology matters
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Oncology Matters reflects the findings from 60 interviews conducted in USA and EU with key opinion leaders and patients (across a range of cancer types)
In search of the human narrative in oncology
Advancements in oncology
treatments over the past decade
have delivered new hope for
many patients. Targeted therapies
have become a growing part of
many cancer treatment regimens.
Continual development in this area,
such as immunotherapies, bring us
closer to truly personalized cancer
treatments of the future.
Alongside innovation in drug
discovery, a parallel revolution in
patient empowerment is rapidly
gathering pace. A growing number
of patients refuse to passively follow
treatment plans laid out by their
doctors; they are more informed
and want to play an active role in
treatment decisions.
The pharmaceutical industry is
responding by moving towards a
patient centric model. They are
moving away from providing cancer
treatments to become solution
providers. The goal is to enhance
the patient and caregiver experience
before, during and after
treatment initiation.
Oncology Matters explores the
changing dynamics between
patients, cancer specialists, the
pharmaceutical industry and
oncology brands. It identifies a
series of human-centric themes that
add to the growing knowledge and
understanding of the clinical side of
the disease. It identifies the human
narrative which adds opportunities
for oncology brands to optimize the
holistic patient experience at every
stage of the journey.
Highlighting what matters to patients, caregivers and healthcare professionals beyond essential clinical needs
5
The era of the empowered patient Knowledge is power, but power must be positively channelled to deliver healthy outcomes
6 O N C O LO G Y M AT T E R S
They say that knowledge is power
and the internet provides patients
with unlimited access to information
on cancer. Information that in the
past was only available to healthcare
professionals is now free flowing
and within everyone’s reach.
Informed patients are increasingly
becoming strong self-advocates
who want a greater say in their
treatment. It is now possible for
patients to become mini experts
on everything from diagnosis,
prognosis and latest breakthroughs
in treatment.
Digital is also driving patient-to-
patient connectivity. Social media
facilitates an open and two way
dialogue whereby patients and
caregivers can share treatment
experiences and advice.
While knowledge may be power,
as Einstein once said, “a little
knowledge can (also) be dangerous”.
Growing patient empowerment
can sometimes come at a cost. A
number of studies have shown that
increasing confidence can lead
patients to make reckless decisions,
such as not taking their cancer
treatments properly. Such behavior
is often fuelled by reinforcement
from ‘friends’ in their
social network.
Harnessing the power of ‘virtual patient influencers’ to engender positive patient behaviors
7
Million of hits on Google*
Cancer cure
Cancer patient association
Cancer treatments
1 8 2 M
1 5 9 M1 2 5 M
*At the time of going to press
Likely they will discuss it with their doctor.
How do patients use the information they find?
Felt more in control and with a better outlook.
Felt it gave them more confidence.
Felt it expanded their treatment options.
8 5 %
7 3 %
4 7 %
2 2 %
At PatientPower.com patients and caregivers connect with a
community of medical experts and patient advocates as a resource
for cancer information and advice. From cutting-edge research and
treatment news, to coping with cancer in everyday life, resources
such as PatientPower empower patients to take a lead in decisions
about their care.
Cancer therapy has traditionally been dominated by IV treatments, however
oral agents are increasingly used, and this means non adherence is becoming
a growing concern.
Our research highlighted examples of patients who follow the advice of other
patients about the risk of recurrence (e.g. breast cancer patients who have had
a lumpectomy). Such patients equipped with little knowledge have taken the
decision to discontinue long term cancer treatments.
8 O N C O L O G Y M A T T E R S
Oncology developed as a highly
academic speciality, with a strong
interventionist ethos. Training
prepares cancer specialists for
complex, analytical treatment
decisions, based on balancing risk,
best evidence, cost and benefits.
The feeling that they must ‘act’
prevails and cancer specialists
want to use all possible treatment
options no matter how small the
potential benefit. This explains why
military or aggressive language
is still commonly used by cancer
specialists who describe ‘weapons’,
‘survival’ and ‘defeat’ — it is the
cancer specialist versus the disease,
and patients can sometimes feel like
a third party.
This can create a disconnect
between cancer specialists and
patients. A new oncology narrative
that better connects with the
emotions of patients and caregivers
is required.
Changing doctor mindsetFrom “treating a disease” to “treating a patient”
A move away from a disease centric model, putting patient needs at the heart of decision making
9
10 O N C O L O G Y M A T T E R S
Oncology brands
Efficacy and survival focus
P A S T
PatientCancer specialist
Academic Orientation
D I S E A S E
Disempowered
In future oncology brands will become the connective tissue joining the dots between cancer specialists, patients and the disease throughout the treatment journey
11
Oncology brands
Complete care package, balancing efficacy, survival, quality of life and support services
F U T U R E
DiseaseCancer specialist
In tune with patient clinical and emotional needs
P A T I E N TE M P O W E R E D
12 O N C O L O G Y M A T T E R S
A new oncology lexiconFrom patient to person-based narrative
Cancer is not a single disease – the
way it presents, manifests and
develops is unique. Likewise, no two
patients experience cancer in the
same way. Personalized medicine
has made it possible to match
patients with the best treatment.
However, demand is now growing
for personalized care packages
which include services tailored to
the needs of individuals.
Patients and doctors have become
increasingly tuned into the need
for holistic care to address the
physical and emotional affects of
cancer. Having been diagnosed with
cancer, patients typically experience
bouts of depression which could be
avoided with psychological support
from diagnosis. The experience of
care and emotional support matters
as much to most patients as clinical
effectiveness and safety. It has also
been linked to improved
health outcomes.
At the Penny Brohn Cancer Institute
in Bristol (UK) the mission is to treat
the whole person. They recognize
the importance of support for their
patients’ physical, mental and
emotional health. It is a place where
therapists show as much interest
in people’s heads and hearts as in
their livers and lymph glands. They
empower patients to make lifestyle
changes and practice self healing.
They have evidence which links
their methods with better health
outcomes than clinical care alone.
“Hearing the words breast cancer
made me think my life was over.
I couldn’t even take in what the
oncologist was telling me….my
mind was working overtime and it
wasn’t pleasant…over the next few
months I became quite depressed,
not wanting to leave the house or
even get out of bed…this carried on
until I sought help myself…I started
to get counselling and the negativity
stated to lift….
What is annoying is that I had to
go through this and find support
myself – why couldn’t my oncologist
have looked out for me?’’
Joan, 64 year old woman diagnosed with Stage IIb breast cancer
Personalized care packages to treat mind and body delivered via support services to patients
13
Patients and doctors are beginning
to challenge the current clinical trial
endpoints that focus only on Overall
Survival (OS) and Progression Free
Survival (PFS) markers. There is
demand for drug makers to include
“patient experience” data, impact
on quality of life, and symptom
reduction as indicators of success
and drug approval.
The FDA has made considerable
progress in urging drug makers to
include the patient perspective in
drug development. The FDA has
issued substantial guidance on
using patient-reported outcomes
(PROs) in trials, and partnered with
the pharmaceutical industry to form
the PRO Consortium, responsible
for generating valid symptom-
measurement tools. Yet, cancer-drug
labels continue to stand in stark
contrast to other types of drug
labels, with only about 25% listing
their effects on patients’ symptoms
and functions.
In this day and age, with more cancer
patients living longer, patients and
doctors are still having to choose
among agents with varying
efficacy–toxicity balances.
Better quality of life endpoints are required to help the pharma industry deliver on the promise of patient centricity
End points that matter to patientsDemand for better quality of life data
“When I sit with patients to discuss
starting a new chemotherapy
regimen, their first questions are
often ‘How will it make me feel?’
and ‘How did patients like me feel
with this treatment?’ Regrettably,
this information is generally missing
from U.S. drug labels and from
published reports of clinical trials
— the two information sources most
commonly available to people trying
to understand the clinical effects of
cancer drugs”.
Dr. Ethan Basch, renowned KOL oncologist, in his recent article in New England Journal of Medicine
14 O N C O L O G Y M A T T E R S
15
In 2011, 15 hematology–oncology drugs
were approved by the FDA. For only one of
these, ruxolitinib (Jakavi) for the management
of myelofibrosis, symptom information was
included in the label. Indeed, ruxolitinib was
the first cancer drug in a decade that included
symptom information in its drug label.
Early in the development of ruxolitinib (Jakavi)
there was a commitment to include symptoms
that were viewed as important to patients as
key endpoints in clinical trials. Questions were
loaded into a handheld device that patients
used to report their own responses daily, with
near perfect levels of compliance — despite
their debilitating symptoms.
R u x O L i T i N i b ( J A k A v i )
16 O N C O L O G Y M A T T E R S
From cure to care I am cured from cancer, now what?
Improvements in prevention,
diagnosis and treatment mean that
certain cancers are beginning to act
more like chronic diseases. Cancer
may come back several times, with
intermittent periods of control
or remission.
Long-term care needs have become
a real consideration for patients
with certain cancers. Drugs such as
ibrutinib (Imbruvica) and idelalisib
are now extending the lives of
patients with Chronic Lymphocytic
Lymphoma. Whilst not cured, their
disease is more stabilized.
It is great news that patients are
surviving longer, but the reality is
that they also have to live with the
ongoing emotional and physical
impact of cancer. Patients don’t just
want to live, they want to live well.
Chronic disease management
therefore necessitates a different,
more collaborative ongoing
relationship between patients and
healthcare professionals. Patients
want greater independence,
emotional care and support for the
consequences of treatment.
8 9 %
9 1 %
m a l i g n a n t m e l a n o m a
w o m e n d i a g n o s e d w i t h b r e a s t c a n c e r
Source: National Cancer Institute
5 Year+ Survival Rates (USA)
US doctors are proposing
that the word “cancer” is no
longer used to describe slow
growing tumours which may
never pose any serious threat.
Not only would a renaming of
unthreatening cancers be less
frightening for patients, it
may also sway doctors away
from using unnecessarily
aggressive treatments
17
Pin-pointing every ‘moment that matters’ in a patient’s journey – including their needs once the ‘clinical’ journey is complete
18 O N C O L O G Y M A T T E R S
Bringing the art of brand-building to the new world of oncology
19
Oncology brands, which focus
on uncovering moments of
truth before, during and after
treatment initiation, are evolving
from providing clinical benefits to
providing solutions and win in
the market.
PatientPulse is our framework which
explores what patients, caregivers
and healthcare professionals ‘Feel’,
‘Think’ and ‘Do’ at every stage of
their journey. It reveals human
insights and unmet needs which can
be leveraged by oncology brands
which seek to deliver a more holistic
patient experience.
Helping to create the human narrative for your oncology brand
20 O N C O L O G Y M A T T E R S
Perceptions about cancer, needs and treatments are formed and explored.
Patients proactively build knowledge by searching for information.
Having been diagnosed with breast cancer, Ann actively sought information on what
type of treatment she might receive. By searching the internet for information on stage
I breast cancer she was able to identify her likely treatment options. She also sought
advice from family and friends and their input on the best treatment approach. Armed
with this information when consulting the radiotherapist, Ann agreed that treatment
with radiotherapy followed by a 5 year course of an aromatase inhibitor would be
sufficient. A medical oncologist subsequently recommended a more aggressive approach
which included a course of IV chemotherapy. Ann was against such an aggressive
treatment which she knew would result in hair loss and other negative effects. Drawing
upon her knowledge resources Ann was able to challenge the medical oncologist’s
recommendation. The medical oncologist empowered Ann to decide the best treatment
and with his support she choose the less aggressive approach.
Before treatment initiation
During treatment initiation it is about optimizing the patient-doctor interaction
so that the right treatment is initiated. It succeeds when doctors (and other
HCPs) ask the right questions to enable patients to express their clinical needs
and emotional priorities. It creates a situation where patients buy into their
cancer treatment, know what to expect and feel well equipped to take the
medication.
“My hematologist was absolutely amazing….he spoke to me as a person and not a
number…in fact he started to get quite emotional himself which really helped me. I
could see that he was really looking out for me and trying to find the best solution. He
explained what different treatments he would give me and also what things I would have
to give up. Knowing that he had been so thorough about the benefits and drawbacks I
could make a really informed choice, which I did.’’
During treatment initiation
Ann, 77 year old woman diagnosed with Stage I breast cancer
Sue, 54 year old woman diagnosed with indolent Non-Hodgkin’s Lymphoma
21
Patient satisfaction depends on how the holistic treatment experience matches
up to expectations established earlier in the journey. The experience goes
beyond the treatment to include support services that help patients stay on
treatment and get the results they need.
“Having been diagnosed with terminal cancer I can honestly say that I wouldn’t be here
today without such a caring team around me, which includes doctors, nurses and my
family. All have been so supportive. After I had my initial chemotherapy, I started to
become really ill. However, the side effects I experienced were exactly what I was told
may happen and that did help me a lot. My nurse was especially great at helping me.
She phoned me at home to follow up on my chemo and talked me through what I needed
to do to try and relieve the symptoms. That saved me having to come in and make the
long journey to the hospital. When I do come to receive my chemo the other nurses take
so much time with me to chat about how I’m doing and what they can do to help. Having
cancer is one thing, but dealing with the treatments is another thing altogether. They
are true angels.’’
After treatment initiation
Jim, 72 year old man with advanced prostate cancer
22 O N C O LO G Y M AT T E R S
23
• Oncology brands will increasingly adopt a patient-centric approach by
delivering against both emotional and clinical needs.
• Drug makers will demonstrate that a more holistic approach, which balances
clinical endpoints with patient needs, will deliver better health outcomes.
• In an era of personal choice, customization and differentiation will be
imperatives, necessitating better patient communication to ensure they ‘opt-in’
to your brand.
• Digital offers a media for marketers to harness the power of ‘virtual patient
influencers’, driving peer-to-peer advocacy.
• A new oncology narrative that reflects the emotional needs of patients will help
brands better connect with end-users.
• In future successful brands will become the connective tissue which join the
dots between patients, caregivers, healthcare professionals and the disease.
• Brands will seek to enhance the patient experience before, during and after
treatment initiation.
Hall & Partners combines insights about people with an expertise in oncology to build and maintain brand relationships that matter to patients and healthcare professionals.
What matters to brands that seek to bring the human narrative to oncology?
Connect with us
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