If personalisation
in medicine has given pharmaceutical market researchers new challenges, then
nowhere is this more true than in the field of oncology, where a proliferation
in ‘clinical segmentation’ (the de facto
breaking down of the patient cohort into ever-smaller groups) has meant that
gaining the insights necessary to market tailored products requires a new
approach.
How can researchers
respond to the needs of pharma and work with the sample patient’s real life
limitations? Will self-selecting, fragmented, and hence smaller, patient sample
sizes lead to skewed results and unrepresentative insights? Is there even still
a need for segmentation research when the drugs themselves are ‘segmented’ by
patient type on a clinical basis?
Why do it?
Pharma clients want
to have a profile of cancer patients, to understand their journey, but also
their lives and their support networks. If they are going to provide good
patient support alongside whatever their individualised treatments are, then
they want to understand their circumstances.
Ethically and morally
there needs to be a strong reason for calling on the time and effort of these
patients, as they may be ‘on the edge’ of self-control, feeling sensitive and
vulnerable.
If someone is in the
last few weeks or months of life, it is not right to talk to them about the
colour of the packaging, for example. A key rule of engagement in oncology
market research is to ensure that you have a good reason to ask for their valuable
time.
Valid reasons include
the need to understand what it is like living with such a condition, and
appreciating their needs along the journey to where they are now. In this case,
they should not be asked to consider future needs, which may cause understandable
fear and distress.
“Much of this
support already exists; finding where the gaps are is a worthwhile research
objective”
A particularly strong
reason for doing this kind of research is to find out not just the experience
of their current treatment and their priorities in assessing new treatments or
modes of administration, but also what support could be put around it. Much of
this support already exists; finding where the gaps are is a worthwhile
research objective.
It is useful to comprehend
the motivation of those patients who agree to take part as well. Some will
either not know their prognosis, or be in denial, and they may be taking part
out of a sense of hope. We have to be very careful not to offer them false hope.
Many of those who
accept their situation are altruistically motivated: they believe it is
important that the journey is made better than they may have experienced, and
that some of the things they have found less palatable are put right for future
patients following their path.
Given this altruism,
it is incumbent on us to be transparent about the objective of the research,
and not to mislead them.
Getting personal
With the huge
increase in differentiation of both diagnosis and treatment in cancer, it is
inevitable that each individual patient is both harder to find – and more
valuable.
As cancer treatments
become ever more personalised, gaining insight into the effects of that
treatment, and what support needs to be built around it, becomes more specific.
Indeed, there are over 200 identified forms of cancer in humans and, like any
disease, location in the body has a large impact on how each is experienced.
That means that
oncology market research also becomes more personalised, with much smaller
samples liable to be influenced by one patient’s views.
At the same time
clients are becoming ever more demanding in their research needs, driven by
that same evolution of new, more personalised treatment needs.
Consequently we need
to ensure design and interpretation of the research meet the highest
professional standards. Because each participant is of such high value to the
pharma company, the interviewer has to be skilled, in order to balance the need
to optimise the information gleaned from the meeting with the fact that, as
researchers, we are working in a very sensitive field.
Researchers are not –
in most cases – medical professionals or therapists. We have a duty to do no
harm and give no new personal information to the patient (or carer) during the
interview.
We are there as
professional market researchers, and sometimes patient subjects can mistake us
for counsellors or medical professionals, which is not our role. We must not
cross this boundary, and clients need to understand that this can mean holding ourselves
back from questions that would lead the patient to go too deeply into their
feelings, and from encouraging them to talk about something they are clearly
avoiding, particularly the future and what it holds.
“Patients
must not be given the idea that the research may lead to a cure for them”
Most importantly,
patients must not be given the idea that the research may lead to a cure for
them; rather it should concentrate on understanding the disease and patients’
needs along their journey.
Be flexible
There is plenty of
potential for pharma to learn more from patients, but clients need to recognise
that this is very sensitive territory. Patients are willing to take part in
market research, but they need to be treated with great respect; this means taking
time and care to consider their needs. Most things are achievable if the
reasons for the research are sound.
Talking to people
with metastatic or terminal diagnoses is not off-limits, provided it can be
done in the right environment and there is a willingness to be flexible. However,
those who come in with a rigid, hard sample and a tight deadline are going to
be disappointed.
Those who are
open-minded and are willing to flex the less necessary criteria can gain very
useful insights from ‘inaccessible’ patients and start to understand their
lives, their opinions and their needs.
The Author
Jane Barrett is master
practitioner, Patient Insights at Cello Health Insight and a qualified psychotherapist. She can be
contacted at jbarrett@cellohealth.com.
First published on Pharmaphorum June 2015