health smartees webinar
TRANSCRIPT
Health Smartees
Webinar
This is the slidedeck of our Health
Smartees Webinar, presented by
Saartje Van den Branden on
Wednesday 12 March. The
presentation elaborates on a Roche
Customer Consulting Board case
study.
HEALTH SMARTEES
WEBINAR SERIES
Part 3: a Roche NL case study
1. Give women with breast cancer a face, both
internally (within Roche) as well as externally.
2. Map and understand the psychosocial and
informational needs of women with breast cancer
in the Netherlands.
RESEARCH OBJECTIVES
3. Evaluate the Breast Friends
concept and other breast cancer
initiatives.
1. Patient care
2. Moderation
3. AE screening &
reporting
Three major challenges
We paid special attention to the emotional response when
talking about the disease. Depressive feelings of
participants that could lead to dangerous situations
and/or disrupt the community resulted in direct actions,
following an action plan that was designed upfront.
1. Patient care
1. Direct moderation by replying on the community and show
empathy / understanding.
2. Contact the participant via private message and engage in
interaction to determine whether more follow-up is needed.
3. If necessary, refer the participant to a specialized
organisation and/or Roche (in case of product/brand issues).
“I did not think it was hard, you could remain as anonymous as you liked (not
telling your name, not sharing photos or any revealing photos). And talking about it
with the moderator was also not difficult, I felt protected by her professional
secrecy.”
“Personally, I had no problems with it. In the end, you only share what you want
to share. I did try to keep it all about me”
To protect the privacy of the participants a set of additional measures was taken
both for participants as well as for Roche.
Roche did not have access to the community. InSites Consulting acted as a proxy & filtered the
information for Roche through different channels (e-mail updates, quotes, progression updates).
In all communication to Roche usernames and verbatims were anonymized. In reporting, we only
use photos that do not portray the participants.
All contributions were carefully screened daily, as some participants tended to share very sensitive
and personal information with the moderator that should not be seen by other participants.
1. Patient care - Privacy
Moderating a health community is different from most
communities we conduct at InSites Consulting.
Participants are not just consumers, they are patients.
2. Moderation – how?
Tone of voice: more serious, less playful, but do not patronize
Be inquisitive, but keep privacy and sensitivity of your
questions in mind
Keep a certain distance from the participants: they are patients,
the moderator is not. Be respectful and sensitive, but do not try to
be one of them.
Gamification cannot be used as in any consumer
research as it does not match the seriousness of the
medical issues discussed, the purpose of the community,
nor the expectations of the participants.
We looked for a moderator meeting the following requirements:
Female
About the same age as the participants
Knowledgeable about breast cancer (in this case, the moderator personally knew breast
cancer patients)
A suitable moderator was found via the InSites Consulting global moderator network.
2. Moderation – who?
Before the community
All relevant members of the project team were certified for detecting &
reporting adverse events (AEs).
Collected the following information from Roche
(Up-to-date) list of brand names (+ molecules) for which adverse
event reporting was required
Contact details of local drug safety instances
Mastered the necessary forms (which needs to be completed in case of an
adverse event).
During the community
Every day, once a day, scanned all participant posts/input for AEs.
Every day, the output of the community was exported to Roche to be
checked as well
After the community
Quality checks and completion of final reconciliation form.
3. Adverse Event screening & reporting
+ loungeOnline
• Natural environment
• Longitudinal
• Online engagement
Community approach
Blog
Discussion
"Is it true that I can not enter the blog
anymore? I would like to make a copy
of it for myself, so that I have a kind
of diary for myself”
"I found the blog tasks very nice to
do. Although I already keep a diary,
it was nice to write it down
again. It is a good way for me to
process everything.”
“This (to write everything
down and think about it) is
good for me, so thank
you for letting me do it”
Why a blog?
Participants really appreciate the blog phase of a
health community; it is the place where they can
write up their personal story while having a one-on-
one trust-relationship with the moderator.
The community in numbers
32 active participants
5 personal blog tasks
452 personal blog messages by participants
36 discussions
737 replies to the discussion
55 photos
6 adverse events reported
1189 messages in total
The story of the communityThree themes on the community:
1. Your breast cancer story - blog
2. Getting & finding information - discussion
3. Feedback on existing initiatives around breast
cancer in the Netherlands (Breast Friends,
IPSO, Pink Ribbon, BVN) - discussion
5 most popular conversation starters
1. An image says more than a thousand words…
2. Your circle of trust
3. Finding information
4. Breast cancer in Dutch society
5. A helping hand
Breast cancer diagnosis is the
start of an emotional rollercoaster
First reaction varies from shock (“the world is ending”) to denial (“this is not possible”) to picking up yourself again and go on (“be strong, you can beat this”).
“The next day, January 18, on my son's birthday I was
diagnosed with breast cancer. At that moment I felt
that the floor beneath me fell away. My husband and I
looked at each other and were totally surprised. How is
this possible… me breast cancer?”
“The diagnosis of breast cancer felt as if a train ran
over me. I was paralyzed, it was fortunate that my
friend was there with me because I heard little
during the remainder of the talk.”
"At that moment I really felt bad. I thought, 'why
ME'? I was not angry, I thought I WILL WIN THIS"
In the first phase of the treatment women with
breast cancer get a lot of attention from
their surroundings (family, friends,…). Not everyone can deal with it and friends are
often lost.
The treatment path is typically described as a
‘rollercoaster’, a unstoppable train or
assembly line. Treatment after treatment
ensues and patients have little to no time
for introspection or contact with the
outside world.
“I experienced that many
acquaintances did their best
and sent me messages… but I
also lost friends who couldn’t
deal with it…”
Treatment: start traversing a long path
with a lot of attention from surroundings.
Who of the following persons is NOT
part of the ‘Circle of Trust’* of women with breast cancer?
A. Colleague
B. Doctor / nurse
* Circle of Trust: person in the surroundings of the patient
who can give support, can be trusted and talked to.
Who of the following persons is NOT
part of the ‘Circle of Trust’* of women with breast cancer?
* Circle of Trust: person in the surroundings of the patient
who can give support, can be trusted and talked to.
A. Colleague
B. Doctor / nurse
‘Circle of trust’ is of vital importance
and ideally consists of relatives, peers, and medical experts.
Nurses, specialists (hospital doctors),
or general practitioners were
mentioned by no one as being part of
the circle of trust.
"The perfect circle of trust would also include a
practitioner who connects with you. It did not
happen with me. Often I still not know where I should
go with various symptoms and I get someone on the
phone who does not know who I am. That bothers
me. The anonymous thing of this whole difficult
process."
Psycho-
Social help &
information
(expert)
Practical help
(Circle of Trust)
Peer contact
& information
(fellow suff.)
Nurses and doctors are knowledgeable,
but have insufficient interest and lack the emotional touch
HCP’s have little to no attention for the personal,
emotional side of the patient (psychosocial).
Patients consult many different HCP’s, making it
difficult to build up a personal relationship.
There is hardly ever any after care,
while patients want a final interview and follow-up.
“With the oncologist I had a difficult
relationship. When the possible side
effects are presented very dryly, it
does not make you happy to say the
least. He was clear, but he could
have been more empathic“
“As a patient you need one or two
persons you can always fall back
on. I wanted to be treated as a
“human” every time and not as a
number.”
After the treatment: which activity really helps
to pick up normal life again?
A. Sports
B. Talk with a psychologist /
psychotherapist
A. Sports
B. Talk with a psychologist /
psychotherapist
After the treatment: which activity really helps
to pick up normal life again?
Sports are essential
to promote physical and mental wellbeing.
“Definitely go to the gym for women
with breast cancer, it is so important
for you psychologically as well as for
your condition as you just have to go
out every day. Meet other people and
get some fresh air, otherwise you
become isolated and no longer dare to
go out on the streets (it is very
important you talk about it!)”
“Five months after my operation I
started with a revalidation program
in the hospital. That was nice and
good for my health. Because of the
medication I gained 8 kilo’s and
exercising really helped. I also met
some nice people and we still have
contact.”
After the treatment: a ‘black hole’.
Need for support & psychosocial aid.
“I do notice that the interest of most people in the course of time
considerably decreases. There is no one to blame, but I do / did suffer
from it. In the third week loneliness strikes. I feel isolated and sometimes
abandoned. There are very few people who contact me. I get that, but I
still suffer from it ... I just need some contact!”
When the patient finally comes of the treatment rollercoaster, there is suddenly time for
introspection. With little support from their surroundings this period is often described as
‘falling into a deep black hole’.
There is also the sudden realization of the fact that breast cancer may never
really disappear, might lead to a shorter life, and will be something to be confronted with
on a daily basis because of the hormone therapy and changes to the body.
In this stage patients often start to feel very lonely as they feel abandoned by the
hospital, while their Circle of Trust diminishes – relatives think and expect that the
breast cancer is over and normal life can resume.
What do patients generally think about
organizations for breast cancer?
A. ‘There is not enough’
B. ‘There is too much’
A. ‘There is not enough’
B. ‘There is too much’
What do patients generally think about
organizations for breast cancer?
‘I cannot see the wood
for the trees anymore’
There are now so many websites with information and
organizations for breast cancer that patients have difficulties
having an overview of what is what. The various agencies and
websites should cooperate more & bundle their forces and
knowledge.
“Bring together bigger and smaller breast cancer organizations
and optimize instead of re-inventing the wheel.”
Contact with peers
is invaluable"The information I was looking for was about the treatments,
side effects and especially stories of fellow sufferers."
"I did not look up a lot of information
but rather asked my peers in our gym hour."
"When it comes to emotions, people who do not have
experience with breast cancer are helpless compared with
experienced experts.”
Thank you!
www.insites-consulting.com
Saartje Van den Branden
+32 9 269 15 11
Martijn Huisman
+31 10 742 10 34
Thank you!