ISMOR Insulin in Social Media

Original Research

June 7th, 2013

ISMOR 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 the best of our knowledge, this is the first time that this type of data will be made widely available on these 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.

ISMOR 3

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

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ISMOR

1. INSuLIN IN SOCIAL MeDIADIGItAL LANDSCAPe

A / Insulin: a common discussion topic both in France and in the UKB / 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

2. INSuLIN IN SOCIAL MeDIADISCuSSION POINtS

A / France & UK – discussion topics on diabetesB / France & UK - mentions of associations, institutions, or pharmaceutical companies

3. BeNCHMARk BetweeNLANtuS, LeVeMIR AND HuMALOG

A / Share of visibility on social media between Lantus, Levemir and HumalogB / 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

667

8

1318

212223

26

5

ISMOR

2 228Insulin 4 286

PainkillersMain breast cancer

treatments

382

77%23%

Frenchposts

UK posts

1. INSuLIN IN SOCIAL MeDIA DIGItAL LANDSCAPe

A / Insulin: a common discussion topicboth 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.

Insulin generates half as many discussions as pain-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 onsocial 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.

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ISMOR 1. INSuLIN IN SOCIAL MeDIA – DIGItAL LANDSCAPe

77%23%

Frenchposts

UK posts

C / France & uk - twitter, Facebook, Forums:

where do the discussions about insulin take place?

english diabetics are fond of twitter, but this is not yet the case for French patients :

@Diabetesuk (16,000 tweets, 46,000 subscribers)

versus @FederationAFD (500 tweets,  130 subscribers)as of February 2013

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)

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ISMOR 1. INSuLIN IN SOCIAL MeDIA – DIGItAL LANDSCAPe

TM

12

3

TM

12

3

France & uk - twitter, Facebook, Forums:

top 10 Forums and Blogs

One major source stands out in France, holding 50 % of the volume of discussions. The trend is different 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.

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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 DESFEMMES DIABETIQUES - forum (24)

LES DIABETIQUES - forum (31)

MAMAN AND CO - forum (36)

DOCTISSIMOForum (257 posts)

The General Health Forum Doctissimo.fr is by far the major French source of references to insulin. 50% of the messages come from this forum.

The other sources only provided a small number of documents. Among these, 2 specialised blogs are more visibly active (Vivre avec un diabète &L’as de Pic).

DIABETES SUPPORTFORUM - 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)

DIABETESCOUKforum (1029 posts)

DIABETES SUPPORTforum (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 totalvolume (Total number of messages on the forum : 115 000).

Interesting... 1 2% of Diabete.co.uk messages were sent using the forum mobile App

ISMOR 1. INSuLIN IN SOCIAL MeDIA – DIGItAL LANDSCAPe

D / France & uk

Profiles discussing diabetes & discussion points

Over 90% of authors are the patients themselves.Patients are type 1 or type 2 diabetics, alongside with women suffering from gestational diabetes.

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 to see doctor tomorrow and most likely be put on insulin. I have a question: I wake up several times during 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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Others1%

PATIENTS 92% including

7.6% of MOTHERS TO BE

Patient relativesand cares

5%

Healthprofessionals

1%

BlogsForums

Social Mediaplatforms

Animalowners

1%

ISMOR 1. INSuLIN IN SOCIAL MeDIA – DIGItAL LANDSCAPe

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 glycémies et ce c.... me dit texto : “ je m en fous carrément du diabète , voyez ça avec votre diabetologue ”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.” http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=47&t=36917&p=353582%EF%BF%BD_3

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.

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ISMOR 1. INSuLIN IN SOCIAL MeDIA – DIGItAL LANDSCAPe

“ 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:

“ My son Alfie is such a quiet , loving lad so I didn’t notice his illness initially. But looking at him now you can 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 ?. ”http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=39&t=37603&p=351351%EF%BF%BD_24 19/02

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” where nurses share their experience and ask questions regarding diabetic treatment protocols.

“ 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-ible on social media, the use of twitter by this commu-nity is uncontestably increasing and can allow marked opinions to be expressed thanks to anonymous use of pseudoshttp://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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ISMOR 1. INSuLIN IN SOCIAL MeDIA – DIGItAL LANDSCAPe

4 A small number of animal owners (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.

ISMOR 1. INSuLIN IN SOCIAL MeDIA – DIGItAL LANDSCAPe

2. INSuLIN IN SOCIAL MeDIA 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=37386&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

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INJECTION DEVICES

SOCIAL IMPACT

BLOOD GLUCOSE MONITORING

PATIENT CARE

ADVERSE EVENTS

SWITCHES

PRODUCT INFO (CLINCAL & BUSINESS)

NUTRITION

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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

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“Your weight will balance out but try to eat a healthy 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? ” h t t p : / / m a m a n s d i a b e t i q u e s . c o m / f o r u m / v i e w t o p i c .php?t=6053&p=219281

2 Injection devices

“Injection devices” includes mentions of pumps and their accessories : needles, pens... Pumps are the second most visible topic and largely mentioned in messages referring to injection devices.

Main concerns:

• How to get on a pump• The fear of injections

“Firstly I have to do the carb counting course, and also I have to have an appointment with the pump con-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! ” http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=25&t=37235&p=349653%EF%BF%BD_17

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

ISMOR 2. INSuLIN IN SOCIAL MeDIA - DISCuSSION POINtS

• 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  ”http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=14&t=37218&p=348569%EF%BF%BD_6

“ 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. ”http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=14&t=36564&p=346648%EF%BF%BD_5

3 Social impact

“Social Impact” is the difficulty in managing diabetes, the way diabetic patients are perceived, and the im-pact of the disease or its treatment on a day-to-day basis.

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 many people. (…) I have had a few hypos that have been very scary, but I am encouraged by the fact that, 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.

“Unfortunately for my lad, this was way too embarrassing. He started down the slippery slope of skipping 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.”http://www.diabetessupport.co.uk/boards/showthread.php?p=415585 26/02

“+1 aussi avec l’évocation du manque d’estime de soi (qui peut être général ou centré sur le traitement du 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...

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ISMOR 2. INSuLIN IN SOCIAL MeDIA - DISCuSSION POINtS

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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.”http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=16&t=37716&p=352379%EF%BF%BD_13

“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 and see that difficult to put time frames on this so I’m very confused again. The doctor told me I’d have to go on fast acting insulin and DAFNE course, then 5 mins later, a consultant told me to carry on as I am !”http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=39&t=37863&p=353516%EF%BF%BD_9 25/02

Precise blood glucose monitoring and practi-cality of the device are considered essential to achieve stable glucose levels

ISMOR 2. INSuLIN IN SOCIAL MeDIA - DISCuSSION POINtS

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“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

“ I do get the odd lump though from time to time so perhaps I need to vary more. I’m also interested in the 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 “Nothing particular found by GP/hospital and they tested for lots and we tried changing insulin, new sites and canulas. ”http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=14&t=37306&p=348825%EF%BF%BD_7

“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”http://www.diabetessupport.co.uk/boards/showthread.php?p=411326#35010663_52

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-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.“http://www.npr.org/templates/story/s...ryId=171651777http://www.diabetessupport.co.uk/boards/showthread.php?p=411915#35260355_1

ISMOR 2. INSuLIN IN SOCIAL MeDIA - DISCuSSION POINtS

B / France & uk - mentions of associations, institutions, or pharmaceutical companies

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 because some of the discussions occur on their websites and 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 Most visible pharmaceutical companies: Novo Nordisk, eli Lilly, 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. ”http://www.diabetessupport.co.uk/boards/showthread.php?p=411915 11/02

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.”http://www.diabetessupport.co.uk/boards/showthread.php?p=415635#36609158_51

“ 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-st ylo-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

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Associations 18 mentions

Institutions46 mentions

Pharmaceuticalcompanies44 mentions

ISMOR 2. INSuLIN IN SOCIAL MeDIA - DISCuSSION POINtS

2 Among the institutions referred to bypatients on the forums, we can list :

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.”http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=20&t=37850&p=353528%EF%BF%BD_12

“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 1.2.2.10Hypoglycaemic therapy [ie tablets or insulin] should be considered for women with gestational diabetes if diet and exercise fail to maintain blood 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

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ISMOR 2. INSuLIN IN SOCIAL MeDIA - DISCuSSION POINtS

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. ”h t t p : / / w w w. d i a b e t e s s u p p o r t . c o . u k / b o a r d s / s h o w t h r e a d .php?p=412467#35432387_24 13/02

Diabetes Hand Foundation:“ Spare a Rose, Save a Child’ was an idea that emerged when a small group of us recently met to discuss how the 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.”h t t p : / / w w w. d i a b e t e s s u p p o r t . c o . u k / b o a r d s / s h o w t h r e a d .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.”http://www.diabetessupport.co.uk/boards/showthread.php?p=411189#34966292_14 08/02

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ISMOR 2. INSuLIN IN SOCIAL MeDIA - DISCuSSION POINtS

3. BeNCHMARk BetweeN LANtuS, LeVeMIR AND HuMALOG

A / Share of visibility on social media(Lantus, Levemir and Humalog)

Total

0 100 200 300 400

LANTUSLEVEMIR

HUMALOG

Split between positive, negative & neutral toneby product

Share of voiceby country

30 11

41

117

201

6 5

5 2

Numberof articles

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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(Lantus, Levemir and Humalog)

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. ”http://www.diabetessupport.co.uk/boards/showthread.php?p=411915#35260355_3 11/02

“ 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. ”http://www.diabetessupport.co.uk/boards/showthread.php?p=415635 27/02

“ 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. ”http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=19&t=37142&p=350638%EF%BF%BD_12 13/02

ISMOR 3. BeNCHMARk BetweeN LANtuS, LeVeMIR AND HuMALOG

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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. ”http://www.diabetessupport.co.uk/boards/showthread.php?p=414749 22/02

“Ideally you would want to correct that 12........ but it looks like you may need more levemir....... 3 am testing.......”http://www.diabetessupport.co.uk/boards/showthread.php?p=410898#34887362_65 07/02

“ 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. ”http://www.diabetessupport.co.uk/boards/showthread.php?p=410769#34802300_15 06/02

C / Benchmark of topics addressed per product (Lantus, Levemir and Humalog)

1 Overall, nutrition is the topic most often associated with the three types of insulin, followed by injection devices.

a. Adapting insulin to their daily eating and exer-cising habits 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

ISMOR 3. BeNCHMARk BetweeN LANtuS, LeVeMIR AND HuMALOG

0

50

100

Product info (clinical and business)

Blood glucose monitoring devices

Nutrition

Injection devices

Switches

Patient journey

Social impact

Adverse events

LANTUSLEVEMIR

HUMALOG

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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. ”http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=15&t=37565&p=351846%EF%BF%BD_12 18/02

“ 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. ”http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=15&t=37689&p=351961%EF%BF%BD_42 21/02

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. ”http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=19&t=10900&p=352019%EF%BF%BD_25 19/02

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

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ISMOR 3. BeNCHMARk BetweeN LANtuS, LeVeMIR AND HuMALOG

“ 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. ”http://www.diabetessupport.co.uk/boards/showthread.php?p=410466#34722933_105 05/02

“ 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 ”http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=19&t=37142&p=349270%EF%BF%BD_4 09/02

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 ”http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=15&t=6664&p=348094%EF%BF%BD_28

3 the proportion of messages related to “switches” is more important for Levemir than for the others.

Actually, switches between Lantus and Levemir are most frequently reported.Switching from Levemir back to Lantus is mentioned as it involves less frequent injections but some patients react better to Levemir.

“ 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 en avril 2012 (…) De toute façon je suis toujours entre 8 et 8,4 en HB aussi bien avec levemir que lan-tus alors cela me fera une injection de moins ”http://forum.doctissimo.fr/sante/diabete/retour-lantus-sujet_171582_1.htm 26/02

“ I never found Lantus to split satisfactorily for me so I swapped to Levemir ” http://www.diabetessupport.co.uk/boards/showthread.php?p=416147#36740580_12 28/02

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ISMOR 3. BeNCHMARk BetweeN LANtuS, LeVeMIR AND HuMALOG

4. PHARMACOVIGILANCe & DIABeteSePotential cases of pharmacovigilanceLantus / Levemir / Humalog

Among messages mentioning insulin, some refer to side effects or inefficiency. Misuses or overdoses can 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.

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ISMOR 4. PHARMACOVIGILANCe & DIABeteS

LANTUS

LEVEMIR

HUMALOGPotential 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..”http://www.diabetes.co.uk/Diabetes-Forum/viewtopic.php?f=16&t=37041&p=346831%EF%BF%BD_11

“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.”http://www.diabetessupport.co.uk/boards/showthread.php?p=415405#36483845_30

“mare de ses piqure lantus victoza qui a fait son effet un moment et puis plus rien hemoglobine a 9.2 quoi 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-viron et par la suite à chaque injections cela me fait un bleu avec le point d’injection rouge vive que ce soit 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.” http://www.diabetessupport.co.uk/boards/showthread.php?p=411326 08/02

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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, ...)

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