ISMOR - Insulin in Social Media Original Research by LexisNexis Business Information Solutions | LexisNexis BIS

ISMOR
Insulin in Social Media
Original Research
June 7th
, 2013

2
Preface
Doctors 2.0 & You, taking place each year in Paris, is a conference with a
mission to help improve healthcare by providing an arena for discussion
about the everyday, real use of Social Media, Apps, and other interactive
tools.
ISMOR, the Insulin in Social Media Original Research study, is a key element
of the partnership between Doctors 2.0 & You and LexisNexis Business
Information Solutions. We chose together with the researchers the sub-
ject of diabetes and insulin, given its importance in Social Media and mo-
bile applications. We couldn’t know in advance how rich the results would
be and are delighted to see how many useful observations have emerged
about the way patients experience diabetes and the use of insulin.
ISMOR provides many avenues of potential collaboration amongst healthcare stakeholders to improve
at a minimum, the information made available about insulin and diabetes and potentially much more. To
thebestofourknowledge,thisisthefirsttimethatthistypeofdatawillbemadewidelyavailableonthese
topics.

We want to sincerely thank the team for their hard work in putting the study together and look forward to
the conversations we will all engage as a result.

Introduction
ISMOR (Insulin in Social Media Original Research) is the first study on social networking
& diabete in 2013. The ISMOR study collected and analysed more than 2,200 e-con-
versations mentioning ‘insulin’ from over 200 social media platforms focusing on
Health (including 50 sources specialised in diabetes) during February 2013 in the
UK and France. Outcomes from the study highlight many potential opportunities for
pharmaceutical companies including:
• Gaining insight into conversations about diabetes products and observing how mes-
sages reach their target audiences;
• Identifying potential medical needs;
• Closing any gaps between lack of information or particular services that would meet
the requirements of specific groups (e.g. parents, mobile patients);
• Adding any new e-PV trends to regular Pharmacovigilance filings to strengthen their
own vision – and the health authorities’ – regarding drug usage under real-life conditions.
The ISMOR study does not aim to be an exhaustive study but rather it is an analysis of the
type of discussions taking place at a particular time to provide high-level insight into the
public debate around insulin in social media. For responses on specific questions related
to this topic, please contact us and we will be very pleased to help.
3

ISMOR
Insulin in Social Media Original Research
June 7th
, 2013
4

1. Insulin in Social Media
Digital landscape
A / Insulin: a common discussion topic both in France and in the UK
B / UK diabetics 4 times more active on social media than French diabetics
C / France & UK - Twitter, Facebook, Forums:
Where do the discussions about insulin take place ?
D / France & UK - profiles discussing diabetes & discussion points
Discussion points
A / France & UK – discussion topics on diabetes
B/France&UK-mentionsofassociations, institutions,
orpharmaceuticalcompanies
3. Benchmark between
Lantus, Levemir and Humalog
A / Share of visibility on social media between Lantus, Levemir and Humalog
B / Tone benchmark between Lantus, Levemir and Humalog
C / Benchmark of topics addressed per product
(Lantus, Levemir and Humalog) - France & UK
4. Pharmacovigilance and Diabetes
A / Potential cases of pharmacovigilance - Lantus, Levemir and Humalog
6
6
7
8
13
18
21
22
23
26
5

2 228
Insulin 4 286
PainkillersMain
breast cancer
treatments
382
77% 23%
French
posts
UK posts
Digital landscape
A / Insulin: a common discussion topic
both in France and in the UK
Insulin is more discussed than breast
cancer drugs
With 2,228 messages quoting “Insulin” in
the UK and France social media in February
2013, it appears that insulin generates a lot
of discussion on social media.
Insulingenerateshalfasmanydiscussionsaspain-
killers but is more addressed than breast cancer treat-
ments on social media.
Insulin is a common topic in social media although:
diabetes concerns approximately 5% of the popula-
tion in France and in the UK . Around 20% of those are
treated by insulin.
B / UK Diabetics 4 times more active on
social media than French diabetics
There are approximately 3 million diabetics in
France and UK according to reports from the associ-
ation Diabetes.org.uk and the “ Institut de Veille Sani-
taire ” INVS.
Although the number of diabetics in the UK is
fairly similar to the number in France, UK people
are nearly 4 times more active on social media regard-
ing insulin.
6
ISMOR 1. Insulin in Social Media – Digital landscape

C / France & UK - Twitter, Facebook, Forums:
Where do the discussions about insulin
take place?
EnglishdiabeticsarefondofTwitter,butthisisnotyetthecaseforFrenchpatients:
@DiabetesUK(16,000 tweets, 46,000 subscribers)
versus @FederationAFD (500 tweets, 130 subscribers)
asofFebruary2013
Forums come first as their format makes them more prone to specific questions and the sharing of ex-
periences regarding treatments.
Type of sources where we can find discussions about insulin :
Photo and video sharing platforms were not included in this study, but could be the object of an update.
Ranking was established by counting messages mentioning Lantus (85% from forums, 14% from Twitter
and 1% from Facebook)
7
TM
1
2
3

France & UK - Twitter, Facebook, Forums:
Top 10 Forums and Blogs
OnemajorsourcestandsoutinFrance,holding50%ofthevolumeofdiscussions.Thetrendisdifferent
in the UK where three major forums are visible. These sources share nearly 98% of the documents. The
other forums and blogs surveyed only provided a small number of documents.
8
VIVRE AVEC UN DIABETE - blog (7)
SANTE MEDECINE - forum (15)
FUTURA SCIENCES - forum (15)
INFERMIERS.COM - forum (17)
AU FEMININ - forum (21)
MAMANPOURLAVIE - forum (21)
L’ASSOCIATION DES
FEMMES DIABETIQUES - forum (24)
LES DIABETIQUES - forum (31)
MAMAN AND CO - forum (36)
DOCTISSIMO
Forum (257 posts)
TheGeneralHealthForumDoctissimo.frisbyfarthemajorFrenchsourceofreferencestoinsulin.50%
of the messages come from this forum.
The other sources only provided a
small number of documents. Among
these,2specialisedblogsare
more visibly active (Vivre
avec un diabète &
L’as de Pic).
DIABETES SUPPORT
FORUM - forum (182)MEDICAL NEWS TODAY - forum (9)
THE INSULIN GANG - forum (7)
DIABETES UK - blog (5)
BMJ - blog (5)
CARERS UK - blog (5)
PHARMAPHORUM - forum (3)
PARKINSON’S UK - forum (2)
DIABETESCOUK
forum (1029 posts)
DIABETES SUPPORT
forum (449)
Diabetes.co.uk is the most visible forum with
over 1000 documents, accounting for approxi-
mately 60% of the total volume (Total number of
messages on the forum : 303 000).
The forum Diabetes Support.co.uk provided 25% of
the total volume (This forum has the largest number of
messages overall : 406 000).
The Diabetes Support Forum UK provided 10 % of the total
volume (Total number of messages on the forum : 115 000).
Interesting...
12%ofDiabete.co.ukmessagesweresentusingtheforummobileApp

D / France & UK
Profiles discussing diabetes & discussion
points
Over 90% of authors are the patients themselves.
Patientsaretype1ortype2diabetics,alongsidewithwomensufferingfromgestationaldiabetes.
1 Over 90% of authors are the patients
themselves.
Many patients express concerns about their condition for treatment, and how to manage diabe-
tes after diagnosis. The uncertainty and lack of knowledge on the disease, its evolution, manage-
ment and treatments is mentioned.
“ je pense que c’est cela qu’on va me prescrire avant la prise d’insuline. Mais je trouve que le fait de ne pas
savoir, pour une personne de mon age, quel est le risque réel pour elle d’avoir à souffrir de réelles compli-
cations avant sa mort est très démotivant. ”
http://forum.doctissimo.fr/sante/diabete/eleve-infirmiere-curieuse-sujet_3969_1.htm#36394160_9 24/02
“ Hi everyone I’ve been borderline diabetic for about a year and now my sugar level has rocketed, so I’m
toseedoctortomorrowandmostlikelybeputoninsulin.Ihaveaquestion:Iwakeupseveraltimesduring
the night and have tea and biscuits (as they’re easiest to eat). When I go on to insulin...what will I be able
to eat during the night?” I am frightened of going hypo and not waking up.”
http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=15&t=37203&p=347879%EF%BF%BD_66
Patients also share their impressions on the follow-up they get from the medical staff:
“ je ne féliciterai jamais assez mes parents de m’avoir tenue à l’écart des diabétos ET diététiiennes pdt
mes 20 premières années de diabète, c’est ce qui m’a préservé des complications ”
http://forum.doctissimo.fr/sante/diabete/objectif-2013sujet_171437_3.htm#35512370_9 14/02
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Others
1%
PATIENTS
92% including
7.6% of MOTHERS TO BE
Patient relatives
and cares
5%
Health
professionals
1%
Blogs
Forums
Social Media
platforms
Animal
owners
1%

Key trends:
A number of French forums are dedicated to women, such as “forum des femmes diabétiques”,
previously known as “forum des mamans diabétiques” where women come looking for support
and advice regarding pregnancy and diabetes. 4 specialised forums (see logos below) are all
among the top 6 French sources.
In the UK, the specialised diabetes forums tend to contain sections or discussion feeds dedicat-
ed to pregnancy and/or gestational diabetes. These do not stand out as much as the specialised
French websites. “I had no idea this part of the forum existed! ”
http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=47&t=36917&p=353582%EF%BF%BD_3 25/02
Approximately 7% of the patient messages concern diabetes & pregnancy.
“Donc je suis en “diabète gesta” sans insuline. En fait, j’en ai fait pour ma première grossesse et là,
j’entame ma seconde grossesse, donc je fais le régime.”
http://mamansdiabetiques.com/forum/viewtopic.php?t=6053&p=219295#36556169_6
“ Mon gyneco est un vrai c...... Je lui explique que j ai été hospitalisé pour du diabete, je lui montre mes
glycémiesetcec....medittexto:“jemenfouscarrémentdudiabète,voyezçaavecvotrediabetologue ”
http://www.mamanandco.fr/forum/topic37650-3285.html#p5810733
“ I am on my 3rd pregnancy (in quite young) and im finding things so difficult level wise, I noticed insulin
resistance right from word go, this is what made me test.”
The use of mobile apps for diabetes management (diet, exercise, glucose levels
etc) appears in messages posted by English patients (8 quotations)
“ Since January, after downloading the ‘MyFitnessPal’ app that allows you to record
your meals in a food diary, gives you a daily calorie goal, according to target weight
and speed of weight loss, I have went from 18 stone to 17 stone....”
http://www.diabetessupport.co.uk/boards/showthread.php?p=413546#35838294_9 18/02
Only the On Track Android app is mentioned once in a French message.
http://forum.doctissimo.fr/sante/diabete/carnet-suivi-glycemie-sujet_169036_1.htm#35354627_107
2 5% are patient relatives, in general parents of
newly diagnosed children. 85 % of these messages are from
English sources.
Most messages in this category are written by parents looking for support on how to deal with
their child’s diabetes. Parents often feel at a loss regarding the diagnosis and their teenager’s at-
titude towards the disease. They look for means to ensure their child has proper diabetes man-
agement.
10

“ Même chez ces jeunes lycéens la gestion du diabète rime encore souvent avec régime strict et sans
sucre bien sur. Alors parfois elle a le courage d’expliquer à sa manière : “mon pancréas ne fabrique plus
d’insuline alors faut que je fasse le boulot avec ma tête et ma pompe. Et aussi que je mange équilibré,
mais ça c’est comme vous. Mieux que vous même la plupart du temps “ Et parfois, elle lâche l’affaire. ”
http://mamansdiabetiques.com/forum/viewtopic.php?t=143&p=219158#36463512_1 25/02
“ I know I have said on here before how our GP told us to up my son’s Lantus by 15 units in one hit in order
to dramatically improve his HbA1c before clinic a week later. That shocked me having already gained so
much knowledge from here, and it still makes me shudder when I think of what that could have done to
him, especially as we had never done night testing and he has it at bedtime.. ”
http://www.diabetessupport.co.uk 20/02
Parents sometimes express guilt regarding their child’s illness and look for support:
“ MysonAlfieissuchaquiet,lovingladsoIdidn’tnoticehisillnessinitially.Butlookingathimnowyoucan
see the weight has fallen off him , increased thirst, vomiting then stomach cramps ( I thought it was a
bug) but when his sight started blurring I rushed him to A&E with the foresight to take a urine sample. (…)
Oh and did I mention the guilt I feel , I am a district nurse - why didn’t I see it ?. ”
3 Health Professionals are responsible
for just over 1% of the messages.
1. FRANCE: The high proportion of French messages
is essentially caused by a forum for nurses “Forum In-
firmiers”wherenursessharetheirexperienceandask
questionsregardingdiabetictreatmentprotocols.
“ Dans mon étage, il y a en soins ide pur: 2 dextro, 1 insuline,
1 perf sous cut, 2 pansements d’escarres. J’ai donc fait ma
première semaine, que je viens de finir. Je suis avec les as,
je m’occupe donc de faire les toilettes, donner à manger,
ranger le linge, donner le goûter... Quand une ide passe par
la, et qu’elle a le temps ( quand elles sont pressées, elles ne
veulent pas), je fais de temps en temps une dextro ou une
insuline...”
http://www.infirmiers.com/forum/debut-stage-difficile-t128553.
html#35616005_1 16/02/2013
2. Although Health Professionals are not very vis-
ibleonsocialmedia,theuseofTwitterby this commu-
nity is uncontestably increasing and can allow marked
opinions to be expressed thanks to anonymous use of
pseudos
http://www.atoute.org/n/forum/showthread.php?t=161459
On Twitter, health professionals also share research and product news :
“Diabète (recherche): reprogrammation épigénétique des cellules alpha dupancréas en bêta (produc-
trices d’insuline)
http://www.jci.org/articles/view/66514 https://twitter.com/JPRiviere/status/306003941848674304
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4 A smallnumberofanimalowners(0.5%)
are present on the forums, discussing their pets’ insulin
treatments, along with insulin storage recommendations.
90% of these messages come from French sources.
“ Féline a été diabétique une petite année, puis on a été tranquille
pendant 3 ans et là ça fait un peu plus d’un an qu’elle est de nouveau
sous insuline (en décembre il me semble). ”
http://forum.doctissimo.fr/sante/medecine-veterinaire/chat-diabete-su-
jet_150298_192.htm#35785827_28 16/02/2013
“ My sister has a diabetic cat, called Charcoal. He is quite elderly now, about 14 I think. He’s been diabetic
for some years, after he got run over (he should be called Lazarus really). She gives him mixed insulin; it’s
a bit hit and miss because he doesn’t always eat the same amount of food, but he does OK. ”
http://www.diabetessupport.co.uk/boards/showthread.php?p=411315 08/02
5 Other authors: other authors (1%) mainly include
students asking questions on insulin functions, but also
blog authors or people working close to diabetics.
Questions are asked on insulin functions in the body :
“ Je voudrais savoir si l’insuline facilite directement ou indirectement la pénétration des Acides Aminés
dans une cellule (notamment musculaire). - Je connais déjà les effets de l’insuline sur le métabolisme
interne d’une cellule (protéosynthèse, glycogénogenèse…) ”
http://forums.futura-sciences.com/biologie/588248-effet-de-linsuline-penetration-cellulaire-acides-amines.
html#36406048_22 24/02/2013
“ It is true that cell of SA node starts dying due to not formation of Insulin Properly and this is one of the
main Cause of myocardial infarction (heart attack) ”
http://www.medicalnewstoday.com/opinions/118931/ 19/02
People working in contact with diabetics
express concerns about the disease :
“ Je suis agent de sécurité et au travail je
dois accepter de prendre des boites jaunes
d’insuline des diabétiques. L’une étant mal fermée
je me suis piqué avec une des aiguilles à insuline
usagée. Concrètement, qu’est ce que je risque ? Le
diabète se transmets à coup sûr ? ”
http://forum.doctissimo.fr/sante/diabete/securite-insuline-
diabetiques-sujet_171559_1.htm#35756587_115 17/02
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A weak signal to be
studied by animal
health labs?
What becomes of used needles and other
disposables is a sensitive issue for pa-
tients and those who are in charge of
product destruction.
Simple devices minimising the associat-
ed risks are among the expressed needs.

Discussion points
A / Discussion topics distribution on total
number of documents
1 Nutrition
“Nutrition” including diets, recipes, weight loss, specific food for diabetics and questions around carb
counting are addressed in this topic.
Favorite topics: Carb count in the UK Vs. recipes in France
in the UK, Low carb diets, carb counting courses and general diet schemes and advice are frequently
mentioned, along with how to manage insulin treatment
when exercising.
“I did get offered DAFNE and few other courses but couldn’t
afford the weeks of work. I understand my health is para-
mount but equally so is my employment in this current cli-
mate.”
http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=19&t=3738
6&p=354284%EF%BF%BD_28 28/02
“ Typical breakfast: natural Greek yoghurt 150g, few blueber-
ries, sweetener. Sometimes slice low carb bread or rye bread
as well. Omelette about twice a week, bacon once a week.
(…)”
http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=15&t=37295&p=
348677%EF%BF%BD_19 10/02
809
421
232
184
170
67
45
24
INJECTION DEVICES
SOCIAL IMPACT
BLOOD GLUCOSE MONITORING
PATIENT CARE
ADVERSE EVENTS
SWITCHES
PRODUCT INFO (CLINCAL & BUSINESS)
NUTRITION
13
DAFNE UK
Mobility and digital innovation in the UK : dedi-
cated mobile application for carb counting
ISMOR 2. Insulin In Social Media - DISCUSSION POINTS
Nutrition is at the
centre of patients
concerns in France
& UK

14
“Yourweightwillbalanceoutbuttrytoeatahealthy
diet and don’t overdose on insulin ”
http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=
39&t=37207&p=347930%EF%BF%BD_23
“I’m on Gliclazide which pushes up your insulin so
can cause hypos, unlike metformin, not sure about
the other one you’re on. I do rugby training twice a
week and I’ve found that my bg usually goes up.”
http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=
25&t=37188&p=347843%EF%BF%BD_15
On French forums, patients express interest in
varied recipes aimed at acquiring a healthier
diet along with lowering the glycaemic index of
the food they eat. A high proportion of pa-
tients expressing themselves on this subject
are women posting on specialised forums (au
féminin etc).
“Mais j’ai entendu dire que les pommes de terre
écrasées avaient un index glycémique plus impor-
tant que lorsqu’elles étaient en morceaux. Peut-être
est-ce pareil avec les pois chiches? S’ils sont mixés
en houmous, ils auront plus d’impact sur notre taux
que entiers? ”
http://mamansdiabetiques.com/forum/viewtopic.
php?t=6053&p=219281
2 Injection devices
“Injectiondevices”includesmentionsofpumpsandtheiraccessories:needles, pens...
Pumpsarethesecondmostvisibletopicand largelymentionedinmessagesreferring toinjectiondevices.
Main concerns:
• How to get on a pump
• The fear of injections
“FirstlyIhavetodothecarbcountingcourse,andalsoIhavetohaveanappointmentwiththepumpcon-
sultant (…). It would appear that if I get the final go ahead from the pump consultant then we’re looking
at the Autumn before I’d get one.”
http://diabetes-support.org.uk/diabetesforum/index.php/topic,3111.msg48927.html
“she has started me on Humilin I Kwik Pen. 10 units.The injection doesnt hurt and it was quite simple to
do. I did my first injection last night myself (I inject myself at bedtime once a day) and apart from being
nervous about getting the needle into the pen and then into me with the correct dose, I managed quite
well and was proud that I managed it! ”
Gourmet diabétique Facebook page
The French stay close to their reputation of “ fin
gourmet ”, they demonstrate a strong interest
in having a healthy diet: 10 713 “ likes ” on the
Gourmet diabétique Facebook page

• Dealing with the pump in various “everyday” situations, where to carry the pump
“ My experience, I’m 47 and I work in an office and live a fairly ‘normal’ life. Wear tight fitting clothes and
my pump fits into my bra. I don’t mind wearing Pjs to bed when I clip the pump to the bottoms. I go to
Greece every year and my pump comes with me - bit of a pain but this would be the case with all pumps
....removing it to swim, hiding it from full sun and watching that no sand gets near it ”
“ I know that some people would rather strap this holder to their waist-belt or what-have-you but I MUCH
prefer having the pump just below or at chest level. Now, that is O.K. for me as a man ... and at seventy-
four, nearly, it matters not to me that the pump is giving me a lump in my shirt’s breast pocket. It is very
convenient for pulling out the pump and ckecking up or putting in instructions. ”
3 Social impact
“Social Impact” is the difficulty in managing diabetes, the way diabetic patients are perceived, and the im-
pactofthediseaseoritstreatmentonaday-to-daybasis.
The social impact of diabetes is the third most mentioned topic.
a. Patients refer to the fear of hypoglycaemia when living alone, along with the impact on their
professional life.
“You are certainly not alone in fearing hypos, I know that this can be a big and debilitating factor for
manypeople.(…)Ihavehadafewhyposthathavebeenveryscary,butIamencouragedbythefactthat,
even with the worst ones I experienced, I have been able to treat them successfully - very important as I
live alone.”
http://www.diabetessupport.co.uk/boards/showthread.php?p=409778 01/02/2013
b. The difficulty of managing diabetes at school is often mentioned by parents along with the
impact of diabetes within the family.
“Unfortunatelyformylad,thiswaswaytooembarrassing.Hestarteddowntheslipperyslopeofskipping
insulin before exams, to avoid any chance of a hypo. I know he just wasn’t going to cope with the embar-
rassment of being escorted out of the hall with everyone watching.”
“+1aussiavecl’évocationdumanqued’estimedesoi(quipeutêtregénéraloucentrésurletraitementdu
diabète), et les diabétos et soignants n’aident pas toujours”
http://forum.doctissimo.fr/sante/diabete/detruit-petit-sujet_171545_1.htm#35437298_22
4 Blood glucose monitoring devices
“Blood glucose monitoring devices” includes mentions of the meters, test strips, etc used for
controling blood sugar levels...
15

16
Patients discuss the important features of their meters:
• Accessories
• Brands
• Feedback on their use
“ I would ask about a ketone meter. We have the Freestyle optium combines glucose/ketone meter. So
easy to use.”
“Et bien pour moi mon diabétologue m’a filé le glucomètre insulinx freestyle papillon. Quand je fais ma
glycémie, je rentre le nombre de glucides de mon repas il me calcul le nombre d’unité d’insuline et hop
tout est enregistré.”
http://forum.doctissimo.fr/sante/diabete/carnet-suivi-glycemie-sujet_169036_1.htm#35354627_106
IOB calculation (Insulins on board) = Active insulin in the body
Size of the meter…“ Funny, it’s the IOB feature that’s the most important to me. I can calculate insulin
doses from carbs myself, but if I want to eat before IOB has run out then the fact that the meter calcu-
lates that in for me is invaluable.”
http://diabetes-support.org.uk/diabetesforum/index.php/topic,3149.msg49581.html#35834227_29
“ I now have a sharps bottle in my desk at work so that does
not travel with me. And after a little pleading with the Diabe-
tes Nurse, my meter has reduced in size. So the bag I need
has reduced in size. As mentioned in my last post , this fits
into a small handbag like this which is better than the toilet
bag but not perfect.”
http://blogs.diabetes.org.uk/?p=1631
5 Patient journey
“Patient journey” includes relationships with healthcare professionals, impressions and feed-
back on medical care received along with disease evolution.
Main discussions occuring :
• Share advice received from healthcare professionals,
• Share experience regarding their own care,
• How disease was diagnosed,
• General comments on the health care system for diabetes :
“Have been mixing novo rapid and insulatard for six years and have recently found out that this is now
not advised by my doctors (NHS) and they say they have not been advising this method for three years
now. Any advice on why they stopped using this method and why wasn’t I ever informed. ”
http://www.diabetessupport.co.uk/boards/showthread.php?p=415592#36568140_6
“Various blood tests done and all healthcare providers told me type 2. Went to hospital today and told
actually type 1 in “honeymoon period”. Does everyone get this ? I have looked at some past posts on this
andseethatdifficulttoputtimeframesonthissoI’mveryconfusedagain.ThedoctortoldmeI’dhaveto
go on fast acting insulin and DAFNE course, then 5 mins later, a consultant told me to carry on as I am !”
Precise blood glucose
monitoringand practi-
cality of the deviceare
considered essential to achieve
stable glucose levels

17
“Il a commencé par être suivi par un diabétologue et cela c’est mal passé. Il a arrêté le suivi et c’est auto
soigné avec l’insuline de son père (diabétique aussi type 1) pendant 7 ans. Il a revu ensuite un diabéto-
logue sympa après ça, qui la mis sous pompe mais dont le suivie était précaire .”
http://forum.doctissimo.fr/sante/diabete/detruit-petit-sujet_171545_1.htm#35354114_1 12/02
6 Adverse events
“Adverse events” includes any undesired effects linked to insulin therapy.
The adverse events potentially linked to insu-
lin are weight gain, trouble at injection sites,
allergies and problems such as hypos that
may be linked to dose adjustment.
“Malgré un controle stict des glucides et des cal-
ories je pense que ses traitements: cardiques
et diabétiques sont responsablesde son récent
problème du foie: une quarantaines de “taches “
ont été dédectées par scanner et IRM ”
http://sante-medecine.commentcamarche.net/forum/affich-1382394-cyrrhose-du-foie-non-alcoolique 22/02
“ IdogettheoddlumpthoughfromtimetotimesoperhapsIneedtovarymore.I’malsointerestedinthe
idea that it could be too much insulin . ”
http://www.diabetes.co.uk 23/02
7 Switches
“Switches” refers to a change of insulin.
Switches between insulin is often due to side effects or inefficiency of the treatment
“NothingparticularfoundbyGP/hospitalandtheytestedforlotsandwetriedchanginginsulin,newsites
and canulas. ”
“Had previously tried a medium acting insulin think out was humalin, not sure though, but counteracted
dp far too much causing early morning hypos . Was worth a try though”
8 Product info
“Product info” refers to clinical and business news on insulins products.
“Novo Nordisk AS says the Food and Drug Administration rejected its applications for approval of once-per-
dayinsulindrugstotreatdiabetes.TheDanishdrugmakersaysitreceiveda“completeresponseletter”from
theFDAregardingitsapplicationsforapprovalofTresibaandRyzodeg,orinsulindegludec,onFriday.“
http://www.npr.org/templates/story/s...ryId=171651777

B / France & UK - mentions of associations,
institutions,orpharmaceuticalcompanies
Pharma companies and health institutions share equal
visibility in the discussions and are present in 2% of the
messages.
Patient associations are less often mentioned, undoubtedly
becausesomeofthediscussionsoccurontheirwebsitesand
forums. A few initiatives from UK associations are mentioned.
When compared to French messages, more references to
institutions are visible in the UK; people complain about in-
sufficient care and follow-up but show how much credibility
they give the NICE (National Institute for Clinical Excellence)
guidelines.
1 Mostvisiblepharmaceuticalcompanies:
NovoNordisk,EliLilly,Bayer,Sanofi,Roche,GSK
a. Announcements made by Novo Nordisk are echoed on forums:
“ Novo Nordisk AS says the Food and Drug Administration rejected its applications for approval of once-
per-day insulin drugs to treat diabetes. The Danish drugmaker says it received a “complete response
letter” from the FDA regarding its applications for approval of Tresiba and Ryzodeg, or insulin degludec,
on Friday. Such a letter indicates the agency determined the application cannot be approved in its cur-
rent form. ”
b. Other mentions of company names concern patients referring to product brand names and
some share their experience with the pharma labs help lines.
“Insulatard and Novorapid can be mixed in the same syringe - after all, Novo Nordisk make a range of
pre-mixed insulins that are exactly that.”
“ Mais avec le stylo Pendiq ®, le système évolue grandement et va plus loin ! (…) Pendiq ® est compatible
avec une large gamme d’insuline des laboratoires Lilly ®, Sanofi - Aventis ® et Berlin-Chemie ® ”
http://www.vivreavecundiabete.com/blog/2013/02/pendiq%C2%AD-le-stylo-a-insuline-electronique/?utm_
source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+VivreAvecUnDiabetecom+%28VivreAvecUnDiabete.
com+-+Actu+Diab%C3%A8te%29
“Oui, les pochettes lilly sont plutôt bien (pas très solides, mais les pharmacies en donnent gratuitement
quand tu vas y chercher ton insuline).”
http://forum.doctissimo.fr/sante/diabete/etui-stylo-insuline-sujet_171553_1.htm#35756637_189
18
Associations
18 mentions
Institutions
46 mentions
Pharmaceutical
companies
44 mentions

2 Amongtheinstitutionsreferredtoby
patientsontheforums,wecanlist:
a. The NHS (National Health Service): most messages criticising the advice given by the NHS or
the funding available for monitors & pumps :
“Not sure whether I’m doing right or wrong, as there seems to be a division between the NHS and others
on how best to treat diabetes, ie carb counting. It’s all so confusing.”
“BUT, after speaking to my GP & having friends
who have been declined I was told that thanks to
the new government & cost-cuts; pump therapy
is no longer offered on NHS in England!! ”
http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?
f=14&t=33053&p=346587%EF%BF%BD_6
b. NICE guidelines:
“Its the NICE guidelines on diabetes in pregnancy
that you need.
http://www.nice.org.uk/nicemedia/pdf/CG063Guidance.
pdf 1.2.2.10
Hypoglycaemic therapy [ie tablets or insulin]
should be considered for women with gestational
diabetesifdietandexercisefailtomaintainblood
glucose targets during a period of 1/2 weeks.”
http://www.diabetessupport.co.uk/boards/showthread.
php?p=413588 18/02
c. Laws and acts protecting patient rights:
“By the way, you are protected at work by the Dis-
ability Discrimination Act.(/is that the latest in-
carnation?) Your employer has to make ‘reason-
able adjustments’ to allow you to do your job, for
example by giving you time off for appointments,
or making sure you have enough breaks to eat
regularly.”
http://www.diabetes.co.uk 24/02
d. ANSM (Agence Nationale de Sécurité du Médicament) and HAS (Haute Autorité de Santé) are
also mentioned on French forums regarding insulin safety:
“La “ liste des 77”, une source d’information qu’il faut connaître ! Publiée par l’Agence du Médicament
(AFSSAPS devenue ANSM) Dispo là : http://ansm.sante.fr/Activites [...] (offset)/0 Cette liste a évolué depuis sa
1ère publication (c’est heureux), il n’y a plus 77 médicaments, mais un total pas très différent.”
http://forums.france2.fr/france2/Les-infiltres/philanthropes-labos-simple-sujet_1049_1.htm#36692440_9
19

3 A number of associations are quoted in messages on
forums by patients sharing information on diabetes-asso-
ciated conditions.
DWED or Diabetes With Eating Disorders:
“Despite the horrendous complications and staggering prevalence, diabulimia or ED-DMT1 is not diag-
nosable and there are no current guidelines for the NHS on how to deal with the issue. DWED’s aim is to
provide support, awareness, advocacy and action.”
http://forum.carersuk.org/viewtopic.php?f=57&t=21307&p=242516%EF%BF%BD_11 05/02
Diabetes UK:
“Smoking and diabetes Almost everybody is aware of
the dangerous link that smoking has with diseases such
as cancer, but are you conscious of its connection with
diabetes? Cigarettes contain more than 4000 chemical
compounds and at least 400 toxic substances.”
http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=19&t=
37178&p=347838%EF%BF%BD_6 06/02;
American Diabetes Association:
“According to the American Diabetes Association, 8.3
percent of the U.S. population has diabetes. ”
php?p=412467#35432387_24 13/02
Diabetes Hand Foundation:
“ Spare a Rose, Save a Child’ was an idea that emerged
whenasmallgroupofusrecentlymettodiscusshowthe
diabetes community could use social media for social
good,” said Manny Hernandez , president of Diabetes
Hands Foundation. “We are asking anyone touched by
diabetes to show their support to help to save the lives of
children around the world.”
php?p=412318#35388748_23 13/02
JDRF (Juvenile Diabetes Research Foundation):
“The Department of Health has today issued a letter reminding health care professionals of the impor-
tance of prescribing adequate amounts of finger prick testing strips to people with type 1 diabetes. The
letter, which is being sent to doctors and hospitals across the country, reminds health professionals of
the difference between type 1 and 2 diabetes and of the importance of self-blood glucose measurement
(SBGM) stating SBGM is essential for safety checks when feeling unwell, or in situations when the blood
glucose might fall too low or too high.”
20

3. Benchmark between
Lantus,LevemirandHumalog
A / Share of visibility on social media
(Lantus, Levemir and Humalog)
Total
0 100 200 300 400
LANTUS
LEVEMIR
HUMALOG
Split between positive, negative & neutral tone
by product
Share of voice
by country
30 11
41
117
201
6 5
5 2
Number
of articles
21
ISMOR 3. Benchmark between Lantus, Levemir and Humalog

Lantus is the most visible of the 3 insulins throughout the month with 242 messages
• Sanofi’s Lantus is the most sold insulin with a market share of approximately 80% in the area of long
lasting insulin.
• Levemir, Novo Nordisk’s detemir insulin, is the second most visible with 128 mentions
• Humalog, Lilly’s lispro insulin is the least visible with a total of 48 references.
None of the three products were linked to any particular event throughout the month.
Levemir is practically invisible in French discussions, 95% of the messages come from British sources.
The France Vs. UK ratio messages that are mentioning Lantus is representative of the overall France Vs.
UK volume.
With 7 messages mentioning Levemir coming from French sources and 121 from the UK, the ratio 5/95 of
French-English messages is much lower than that of the overall document volume.
Unlike Levemir, the ratio of French vs English messages is much higher for Humalog.
B / Tone benchmark
a. Not only is Lantus the product that generates the highest number of messages, but also
the most frankly positive or negative opinions. 12% of the comments are negative, referring
mainly to the difficulties to get stable glucose levels and side effects.
“ Anyway the trouble with Lantus is that for some people it can be really peaky. ”
http://diabetes-support.org.uk/diabetesforum/index.php/topic,3162.msg49717.html 20/02
Some generally negative comments about Lantus are made : “ I’ve never got on well with anything Eli
made, and Lantus is evil too so thats Sanofi off my Xmas card list as well. ”
“ A few years ago the German cost effectiveness body (NPH) reported that it could find no proof that
long-acting insulin analogues, Lantus and Levemir, were better than human insulin in long-term out-
comes in people with Type 2 diabetes. ”
http://www.diabetessupport.co.uk/boards/showthread.php?p=409834#34400346_4 01/02/2013
“ I am on insulin humulin 70 30. 46 units and on humalog 10 units at lunch, Just tired of the injections wish
could find smthing beta. ”
http://www.medicalnewstoday.com/opinions/4045/#35028357_27 08/02
b. Positive messages often refer to the advantages of a particular insulin compared to one
previously used, along with its efficiency.
“ Insulatard used to be used as a basal but was largely superseded a decade ago by Lantus and Levemir,
which are much more predictable insulins. ”
“ I have simply found a background level of Lantus that gives me a relativly stable BM during the day
and just use Nova-Rapid to take care of my BM after I have eaten and funny enough my hbA1c has been
around the 6 point mark for sometime now. ”
22

Lantus (insuline glargine) : des cas de cancers ont été détectés (et dont l’imputabilité à la Lantus est
loin d’être certaine), mais il n’en reste pas moins que cette insuline apporte des avantages indéniables
aux patients par rapport à celles qui existaient avant ” http://forums.france2.fr/france2/Les-infiltres/philan-
thropes-labos-simple-sujet_1049_1.htm 26/02 “pas de pb d’insuline non plus (que ce soit avec la novorapid ou
l’humalog), je me sens “parfaite” ”
http://forum.doctissimo.fr/sante/diabete/quitter-medtronic-aller-sujet_171554_1.htm#36473142_45 25/02
c. In neutral messages, patients share questions and advice on diabetes management and
treatments (the subject of dose is the most frequent)
“ Then after a couple of weeks if his morning levels were a bit low or high, they altered his dose of Lantus,
but only by one unit at a time. ”
http://www.diabetessupport.co.uk/boards/showthread.php?p=411371 09/02/2013
“ For example, if you are generally high in the morning, you might want to look at your levemir and see if
the dose is sufficient. ”
“Ideallyyouwouldwanttocorrectthat12........butitlookslikeyoumayneedmorelevemir.......3amtesting.......”
“ Si je veux avoir des gly correctes je suis à 30 U le matin et 56 U le soir uniquement pour la Levemir ”
http://forum.doctissimo.fr/sante/diabete/retour-lantus-sujet_171582_1.htm 27/02
“ How are you taking your levemir Grainger ? It might be worth taking in two doses (splitting) so that you
can have less working overnight and more during the day of you need it. ”
C/Benchmarkoftopicsaddressedperproduct
1 Overall, nutrition is the
topic most often associated
with the three types ofinsulin,
followedbyinjectiondevices.
a. Adapting insulin to their daily eating and exer-
cisinghabits is often discussed.
“ For the first month I was on fixed doses (Novo-
rapid at mealtimes and Lantus before bed), and
it took a loooong time to get me up to the right dose.
Then I saw a dietitian who explained all about carb
counting and encouraged me get the book Carbs &
Cals (I actually got the app for my Blackberry). ”
http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=2&t
=28287&p=351537%EF%BF%BD_5 19/02
0
50
100
Productinfo
(clinicaland
business)
Blood
glucosem
onitoringdevices
Nutrition
Injection
devices
Switches
Patientjourney
Socialim
pact
Adverseevents
LANTUS
LEVEMIR
HUMALOG
23

b. Diet change has a positive impact on blood sugar levels:
“ To cut a long story short, they were so worried about my state of health that I had to start insulin lev-
emir once a day, which brought my levels down nicely. Meanwhile, I changed my diet a lot so I lost weight
very quickly. I hated being on the injections, absolutely hated it and fought tooth and nail to be allowed
off them. ”
“ When I started counting carbs I was on 2units of humalog for every 10g of carbohydrate but since los-
ing weight and starting on victoza medication this has reduced to 2units for every 15g of CHO and then
further still to 1 unit for every 10g of CHO. So you need to know that as a starting point. Have you spoken
to your diabetic specialist or nurse about this? There may be a DAFNE course (or something similar) in
your area that you can go on that will teach you all about it. ”
c. Impact of exercise on blood sugar levels is also mentioned:
“ Ca fait une semaine que je ne m’injecte plus du tout d’insuline, et sans insuline ma glycémie est tout à
fait normal autour de 1g par litre de sang Je précise que chaque jour je fais environs 10km sur mon vélo
d’appartement, je sais que le sport fait réduire le taux de sucre dans le sang. Alors qu’en pensez vous ?
Suis je vraiment diabétique ? ”
http://forum.doctissimo.fr/sante/diabete/vraiment-diabetique-sujet_171528_1.htm#34538673_51
2 Injection devices is the second most frequent topic asso-
ciated with insulin, although it is in 1st place on French social
media, where pumps are mentioned in nearly half of those
messages referring to Lantus.
Messages about Humalog are also often associated with injection devices.
“ Au début j ai commencer avec les seringue, ( novorapid, lantus) mais apres j ai eu la pompe a insuline
animas.”
http://www.lesdiabetiques.com/index.php/forum/5-type-1/11142-decouverte-du-diabete#36170147_5 21/02
Main sub-topics :
a. The association of the pump and carb counting helps achieve better control:
“ If I hadn’t done the carb counting course I would still be increasing my evening levemir and swinging
even higher in the morning. I’ve been pumping for 18 months now and my control is excellent and I would
never be without my pump, BUT the biggest difference was the carb counting. ”
b. Needles & pens, especially regarding transport bags for pens:
“ Je cherche où je pourrai avoir un étui en tissu pour transporter mes aiguilles et mes 2 stylos d’insuline
(Lantus & Humalog) ”
http://forum.doctissimo.fr/sante/diabete/etui-stylo-insuline-sujet_171553_1.htm 15/02
24

“ Don’t know why I made that silly mistake as a) they are 2 different colours and types and b) for my Hu-
malog I use the Humapen which I have used all the time before meals for the Mix. ”
“ I use a Lantus Solostar pen which contains 3mL in total. . The strength is 100u/mL so the pen contains
100 x 3 = 300 units. The graduations marked on the pen are from 300 to 0, so if I dial up 60, that is 60
units and NOT 60/3 or whatever you seem to think it is ”
c. Disposal of used products:
“ I’m starting with the Lantus Solostar on monday. My thinking is if I can put the empty pen in the trash bin
then I won’t fill my 1 litre sharps bin too quickly. That way I can prolong the hassle of getting rid of a full
bin ”
3 The proportion of messages related to “switches” is more
important for Levemir than for the others.
Actually,switchesbetweenLantusandLevemiraremostfrequentlyreported.
SwitchingfromLevemirbacktoLantusismentionedasitinvolveslessfrequentinjectionsbutsome
patientsreactbettertoLevemir.
“ Je revient a la lantus ( après 11 mois de levemir) car mon HB ne s’est pas ameliorée depuis le passage de lan-
tus a levemir enavril2012 (…)Detoutefaçonjesuistoujoursentre8et8,4enHBaussibienavec levemir que lan-
tus alorscelameferauneinjectiondemoins ”
http://forum.doctissimo.fr/sante/diabete/retour-lantus-sujet_171582_1.htm 26/02
“ Ineverfound Lantus tosplitsatisfactorilyformesoIswappedto Levemir ”
25

4. Pharmacovigilance
& Diabetes
e
Potential cases of pharmacovigilance
Lantus / Levemir / Humalog
Amongmessagesmentioninginsulin,somerefertosideeffectsorinefficiency.Misusesoroverdosescan
also be mentioned.
These messages are potential pharmacovigilance cases that are transmitted to the pharmaceutical
companies according to a specific protocol, documented and archived to be treated by the companies’
pharmacovigilance teams.
For Lantus and Humalog, almost 10% of the messages are potential pharmacovigilance cases.
These cases only represent 4% of the messages for Levemir.
Potential PV cases mainly refer to :
• inefficient insulin
• hypoglycaemia
• and side effects linked to the injection with the majority of these messages referring to a burn-
ing /stinging feeling caused by the insulin.
26
ISMOR 4. PHARMACOVIGILANCE & DIABETES
LANTUS
LEVEMIR
HUMALOG
Potential PV cases
Total number of documents
(excluding potential PV cases)
0 50 100 150 200 250
10%
4%
8%

Potential PV cases are generally reported by the patient but parents of patients can also be the
case reporters.
Example :
“His lantus at bed time is the only injection he dreads as it stings..”
“I have been having problems with injecting the lantus in my legs due to lumpy sites and was told to inject
in my back in the area above my buttocks but very low down the back, basically the handles region . I
have never been told to inject there before but will give it a go tonight.”
“maredesespiqurelantusvictozaquiafaitsoneffetunmomentetpuisplusrienhemoglobinea9.2quoi
faire”
http://forum.doctissimo.fr/sante/diabete/victoza-sujet_166606_93.htm#35108907_42 09/02/2013
“moi c’était la lantus qui brûlait (et qui brûle tout le monde ou presque)”
http://forum.doctissimo.fr/sante/diabete/injection-insuline-brule-sujet_171575_1.htm 25/02
“Depuis vendredi lorsque je m’injecte de l’insuline rapide (Humalog) ça me brûle pendant 10 minutes en-
vironetparlasuiteàchaqueinjectionscelamefaitunbleuaveclepointd’injectionrougevivequecesoit
au bras ou au ventre”
http://forum.doctissimo.fr/sante/diabete/injection-insuline-brule-sujet_171575_1.htm 24/02
“When I did use levemir it caused alot of hypos during the day and early afternoon even when reducing
qa. So, stopped the levemir and rarely had hypos.”
27
ISMOR 4. PHARMACOVIGILANCE & DIABETES

Methodological appendix
ISMOR
(Insulin in Social Media Original Research) was carried out after collecting
and analysing discussions throughout the month of February on over 200 social
media sources, of which 50 are dedicated to diabetes.
After an automatic download based on queries, the documents were sorted and
analysed by LexisNexis Business Information Solutions Life Sciences analysts.
The team have integrated over 10 years of work in France and Europe into the
study and combined it with specialist expertise in Web 2.0 and eHealth.
The team has been trained to pharmacovigilance methodology.
Further information:
+33 1 71 72 48 49
http://bis.lexisnexis.fr/contact_us.html
*Spelling mistakes have not been proofed from original authoring in social media (blogs, forums, ...)
28
DesignbyAlexandredeSaint-Jouanalex@saintjouan.com/Acetone.fr

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