Are Pharmaceutical companies, listening to patients? An insight view of how patient research has evolved over the past years, IVP Iberica has wide experience in patient research projects

1. Are pharmaceutical companies listening to patients?
I Can’t hear you!
I know how you feel…

2. 221/02/17
Let’s have a look at the scenario 10 years ago
 A decade ago, or thereabouts,
pharmaceutical companies took the word of
the physician on patients needs, gaps, and
feeling as the only possible truth in life, and
so action on any improvement on a
drug/dosing/administration was based on
that.
 Patients at that time were not asked, in
qualitative studies about their opinion on
their disease, limitations, how they would
like the future to be in terms of treatment,
QoL for them, etc, so no one was listening to
them...
 The physician’s word was the main, if not
the only source of information for pharma
companies, on their clients /patients

3. 321/02/17
Do patients want to speak their hearts out?
 Definitely, yes. Research carried out over the past years, proved that
patient’s interviews are not just a source of valuable and first hand
information, but patients more and more want to feel that they are
heard and understood. They want to be regarded and taken into
consideration as they are the ones suffering from whatever their
condition at first hand. A good sample of this, is that, when holding
groups/IDIs at IVP iberica with Haemophilia, Epilepsy, Multiple
Sclerosis, Cystic Fibrosis and other delicate and /or “rare diseases”
patients, open up their hearts to us as a kind of therapy for them.

4. 421/02/17
Are labs and patients rowing in the same direction?
 Definitely, they have turned the tables.
Pharmaceutical companies have
realized, by doing dual research, say
with Alzheimer patients /carers and
Physicians, that, the output they were
getting, through MR Institutes, differed
quite a lot, and quite often, in such a
way that physicians are considered a
highly source of information for all
prescribing patterns, clinical issues, etc,
but when it comes to putting
themselves on the patient’s shoes,
there is a great disharmony between
them.

5. 521/02/17
Strength comes in numbers…
Patient suffering from this low prevalence
conditions have noticed that, there is one main
channel they can address to, and while they will
always listen and follow physician instructions, as
they become more knowledgeable and desperate
about time passing by and them not improving,
they have found shelter and all type of coverage
through one main channel:
“Patients Associations”. There is almost one of
them for each chronic or rare condition and in
some cases, they work at local, regional and
national level. They typically would advise patients,
training on handling devices, bring them up to date
on new drugs about to be released (and even on
experimental one, like Cannabidiol in Epilepsy) and
they also provide all type of logistics and often
financial support.

6. 621/02/17
Patient’s Associations the glue that stick
patients together
Over the past years the number of patients’
associations has remarkably grown in number and
also in services provided. That is the case, that in
Spain, by using a browser, one can find as many
as 1.681 of them, dealing with all kind of diseases,
syndromes and conditions. For rare diseases there
is a Federation that groups them all up called
Feder, where they would refer you to the right
person in each association (e.g. Fabry disease or
West Syndrome). The are the glue that stick
Patients together and most of them who live
Virtually “jailed” in their house because of fear of
the social stigma, find out, both with market
research groups as well as with the associations
that they are not one of a kind, and that there are
many people out there trying to lead a normal life,
despite the condition they suffer.

7. 721/02/17
Map of Spanish Patients' Associations
This is the map of the main existing associations in Spain

8. 821/02/17
Do patients talk to each other?
• Patient’s join forces
Patients at their end have discovered a whole new world,
through the association who sometimes set up
activities, to keep them busy while parents may be at
work, so it is not just therapy it is also a social need, the
one that cares for them.
Once they meet at the association patients start their own
parallel channel, - now that they have discovered they are
not alone in their disease- and so they use technology,
i.e, wasap to develop large wasap groups, in which
sometimes they integrate the psychologist and the doctor,
and they have they private place, where they can share
their fears, queries, jokes, and even plan activities
together.
At IVP Iberica we have reached collaboration agreements
with many different patients’ association and they favour
the creation of these groups.

9. 921/02/17
Bridging the Gap • Once pharmaceutical companies have
checked that there are some
interferences between what doctors
claim and what real patients needs,
claims and concerns are, they have
decided that there is more than meets
the eye, and that doctors did not have
the “real and emotional” information.
• Hence, they decided to approach
patients, not just via PRF’s, but
interviewing them, confronting those
interviews / Focus Groups with Drs’
opinions, only to find out that the
messages they were getting were, in
some cases, contradictory. That was
their first step, which they have
canalized through MR Institutes.

10. 1021/02/17
ONE STEP BEYOND
INTERVIEWING PATIENTS IN THEIR OWN ENVIRONMENT
 With all multimedia channels available the next step is
quite clear: How about going to interview patient at their
home, capture their feelings apart from rationale, while
also being in his /her territory, filming where they kept the
medication and even how they took it, and how they felt
about all of it. Now they have a first hand testimony, to
contrast the view of the physicians.
 Also, another useful and rich path, in terms of
information, is to ask the patient to fill out a diary, at the
very moment he is getting an infusion or injecting himself,
etc. This can be supplemented with patient taking
pictures, voice notes, and short videos with their
smartphones, capturing that moment which, over time,
will be seen more distant and rational. In short it is
emotional instant feedback what they are after and
physicians could never deliver that!

11. 21/02/17 11
• María Jesús Paniagua - Managing Director
• mjesus.paniagua@ivp-iberica.commjesus.paniagua@ivp-iberica.com
• Miren Aramburu -Associate Director
• Miren.aramburu@ivp-iberica.comMiren.aramburu@ivp-iberica.com
• Pilar Sanz- Senior International Research Executive
• pilar.sanz@ivp-iberica.compilar.sanz@ivp-iberica.com
• Alberto Herreros – Key Account Manager
• alberto.herreros@ivp-iberica.comalberto.herreros@ivp-iberica.com

12. Chart template 1221/02/17
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