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


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Diabetes is a chronic disease for which compliance is a central issue. Complying with the requirements of a strict diet, a regular glucose blood measurements, and medications, requires patients to focus in on their choices and behavior throughout the day. Through ISMOR, LexisNexis Business Information Solutions in partnership with Doctors 2.0 TM & You, will study how Social Media informs us about the use of insulins, including Lantus, Levemir and Humalog.

What practical levers will the study of insulin on Social Media bring?
Do British patient with diabetes use web 2.0 tools in the same way as French patients?
Are patient association forums popular for exchange?
Are patients’ relatives active members of virtual communities?
Do healthcare professionals exchange through these communities?
Do prices or product shortages appear as concerns?
What services or products do patients with diabetes on insulin discuss?
What unmet expectations arise from conversations?

Insulin in Social Media Original Research will result from the collection and analysis of discussions on over 200 social media platforms during February, 2013. 50 of these platforms are diabetes-specific. This study, conducted by LexisNexis Business Information Solutions with commentary from Doctors 2.0 & You, will identify the most discussed topics regarding insulin, including Lantus, Levemir and Humalog.
ISMOR was published at the Doctors 2.0 & You conference on June 6-7, 2013.

Le diabète est une maladie chronique pour laquelle l’observance est une question centrale. Qu’il s’agisse du régime alimentaire astreignant, des mesures de glycémies régulières ou de l’observance médicamenteuse, le patient diabétique se doit d’être attentif à ses choix et comportements tout au long de la journée.

A travers ISMOR, LexisNexis Business Information Solutions en partenariat avec Doctors 2.0™ & You, va s’intéresser à la manière dont les diabétiques français et britanniques exploitent les réseaux sociaux et échangent autour de l’utilisation des insulines notamment de Lantus, Levemir et Humalog.

Quels leviers de communication autour des insulines vers les médecins, associations de patients, sites spécialisés et bloggeurs?
Les diabétiques britanniques utilisent-ils de la même manière le web 2.0 que les français ?
Les forums de discussion des associations de patients sont-ils des lieux d’échanges prisés ?
Les proches de patients sont-ils des membres actifs des communautés virtuelles ?
Les professionnels de santé échangent-ils à travers ces canaux ?
Le prix ou les ruptures de stocks apparaissent-ils comme des préoccupations ?
Quels autres services ou produits sont discutés par les diabétiques?
Quelles attentes insatisfaites émergent ?

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  • 1. ISMORInsulin in Social MediaOriginal ResearchJune 7th, 2013
  • 2. 2PrefaceDoctors 2.0 & You, taking place each year in Paris,  is a conference with amission to help improve healthcare by providing an arena for discussionabout the everyday, real use of Social Media, Apps, and other interactivetools.ISMOR, the Insulin in Social Media Original Research study, is a key elementof the partnership between Doctors 2.0 & You and LexisNexis BusinessInformation 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 wouldbe and are delighted to see how many useful observations have emergedabout the way patients experience  diabetes and the use of insulin.ISMOR provides many avenues of potential collaboration amongst healthcare stakeholders to improveat a minimum, the information made available about insulin and diabetes and potentially much more. Tothebestofourknowledge,thisisthefirsttimethatthistypeofdatawillbemadewidelyavailableonthesetopics.   We want to sincerely thank the team for their hard work in putting the study together and look forward tothe conversations we will all engage as a result. 
  • 3. IntroductionISMOR (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 onHealth (including 50 sources specialised in diabetes) during February 2013 in theUK and France. Outcomes from the study highlight many potential opportunities forpharmaceutical 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 meetthe requirements of specific groups (e.g. parents, mobile patients);• Adding any new e-PV trends to regular Pharmacovigilance filings to strengthen theirown 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 thetype of discussions taking place at a particular time to provide high-level insight into thepublic debate around insulin in social media. For responses on specific questions relatedto this topic, please contact us and we will be very pleased to help.3
  • 4. ISMORInsulin in Social Media Original ResearchJune 7th, 20134
  • 5. 1. Insulin in Social MediaDigital landscapeA / Insulin: a common discussion topic both in France and in the UKB / UK diabetics 4 times more active on social media than French diabeticsC / France & UK - Twitter, Facebook, Forums:Where do the discussions about insulin take place ?D / France & UK - profiles discussing diabetes & discussion points2. Insulin in Social MediaDiscussion pointsA / France & UK – discussion topics on diabetesB/France&UK-mentionsofassociations, institutions,orpharmaceuticalcompanies3. Benchmark betweenLantus, Levemir and HumalogA / Share of visibility on social media between Lantus, Levemir and HumalogB / Tone benchmark between Lantus, Levemir and HumalogC / Benchmark of topics addressed per product(Lantus, Levemir and Humalog) - France & UK4. Pharmacovigilance and DiabetesA / Potential cases of pharmacovigilance - Lantus, Levemir and Humalog66781318212223265
  • 6. 2 228Insulin 4 286PainkillersMainbreast cancertreatments38277% 23%FrenchpostsUK posts1. Insulin in Social MediaDigital landscapeA / Insulin: a common discussion topicboth in France and in the UKInsulin is more discussed than breastcancer drugsWith 2,228 messages quoting “Insulin” inthe UK and France social media in February2013, it appears that insulin generates a lotof 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 aretreated by insulin.B / UK Diabetics 4 times more active onsocial media than French diabeticsThere are approximately 3 million diabetics inFrance and UK according to reports from the associ-ation and the “ Institut de Veille Sani-taire ” INVS.Although the number of diabetics in the UK isfairly similar to the number in France, UK peopleare nearly 4 times more active on social media regard-ing insulin.6ISMOR 1. Insulin in Social Media – Digital landscape
  • 7. C / France & UK - Twitter, Facebook, Forums:Where do the discussions about insulintake place?EnglishdiabeticsarefondofTwitter,butthisisnotyetthecaseforFrenchpatients:@DiabetesUK(16,000 tweets, 46,000 subscribers)versus @FederationAFD (500 tweets, 130 subscribers)asofFebruary2013Forums 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 Twitterand 1% from Facebook)7ISMOR 1. Insulin in Social Media – Digital landscapeTM123
  • 8. France & UK - Twitter, Facebook, Forums:Top 10 Forums and BlogsOnemajorsourcestandsoutinFrance,holding50%ofthevolumeofdiscussions.Thetrendisdifferentin the UK where three major forums are visible. These sources share nearly 98% of the documents. Theother forums and blogs surveyed only provided a small number of documents.8VIVRE 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)TheGeneralHealthForumDoctissimo.frisbyfarthemajorFrenchsourceofreferencestoinsulin.50%of the messages come from this forum.The other sources only provided asmall number of documents. Amongthese,2specialisedblogsaremore visibly active (Vivreavec 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) is the most visible forum withover 1000 documents, accounting for approxi-mately 60% of the total volume (Total number ofmessages on the forum : 303 000).The forum Diabetes provided 25% ofthe total volume (This forum has the largest number ofmessages overall : 406 000).The Diabetes Support Forum UK provided 10 % of the totalvolume (Total number of messages on the forum : 115 000) 1. Insulin in Social Media – Digital landscape
  • 9. D / France & UKProfiles discussing diabetes & discussionpointsOver 90% of authors are the patients themselves.Patientsaretype1ortype2diabetics,alongsidewithwomensufferingfromgestationaldiabetes.1 Over 90% of authors are the patientsthemselves.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 passavoir, 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. ” 24/02“ Hi everyone I’ve been borderline diabetic for about a year and now my sugar level has rocketed, so I’mtoseedoctortomorrowandmostlikelybeputoninsulin.Ihaveaquestion:Iwakeupseveraltimesduringthe night and have tea and biscuits (as they’re easiest to eat). When I go on to insulin...what will I be ableto eat during the night?” I am frightened of going hypo and not waking up.” 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 pdtmes 20 premières années de diabète, c’est ce qui m’a préservé des complications ” 14/029Others1%PATIENTS92% including7.6% of MOTHERS TO BEPatient relativesand cares5%Healthprofessionals1%BlogsForumsSocial MediaplatformsAnimalowners1%ISMOR 1. Insulin in Social Media – Digital landscape
  • 10. 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 supportand advice regarding pregnancy and diabetes. 4 specialised forums (see logos below) are allamong 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 specialisedFrench websites. “I had no idea this part of the forum existed! ” 25/02Approximately 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.”“ Mon gyneco est un vrai c...... Je lui explique que j ai été hospitalisé pour du diabete, je lui montre mesglycémiesetcec....medittexto:“jemenfouscarrémentdudiabète,voyezçaavecvotrediabetologue ”“ I am on my 3rd pregnancy (in quite young) and im finding things so difficult level wise, I noticed insulinresistance right from word go, this is what made me test.” use of mobile apps for diabetes management (diet, exercise, glucose levelsetc) appears in messages posted by English patients (8 quotations)“ Since January, after downloading the ‘MyFitnessPal’ app that allows you to recordyour meals in a food diary, gives you a daily calorie goal, according to target weightand speed of weight loss, I have went from 18 stone to 17 stone....” 18/02Only the On Track Android app is mentioned once in a French message. 5% are patient relatives, in general parents ofnewly diagnosed children. 85 % of these messages are fromEnglish sources.Most messages in this category are written by parents looking for support on how to deal withtheir 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.10ISMOR 1. Insulin in Social Media – Digital landscape
  • 11. “ Même chez ces jeunes lycéens la gestion du diabète rime encore souvent avec régime strict et sanssucre bien sur. Alors parfois elle a le courage d’expliquer à sa manière : “mon pancréas ne fabrique plusd’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. ” 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 orderto dramatically improve his HbA1c before clinic a week later. That shocked me having already gained somuch knowledge from here, and it still makes me shudder when I think of what that could have done tohim, especially as we had never done night testing and he has it at bedtime.. ” 20/02Parents sometimes express guilt regarding their child’s illness and look for support:“ MysonAlfieissuchaquiet,lovingladsoIdidn’tnoticehisillnessinitially.Butlookingathimnowyoucansee the weight has fallen off him , increased thirst, vomiting then stomach cramps ( I thought it was abug) 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 ?. ” 19/023 Health Professionals are responsiblefor just over 1% of the messages.1. FRANCE: The high proportion of French messagesis essentially caused by a forum for nurses “Forum In-firmiers”wherenursessharetheirexperienceandaskquestionsregardingdiabetictreatmentprotocols.“ 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 mapremière 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 parla, et qu’elle a le temps ( quand elles sont pressées, elles neveulent pas), je fais de temps en temps une dextro ou uneinsuline...” 16/02/20132. Although Health Professionals are not very vis-ibleonsocialmedia,theuseofTwitterby this commu-nity is uncontestably increasing and can allow markedopinions to be expressed thanks to anonymous use ofpseudos Twitter, health professionals also share research and product news :“Diabète (recherche): reprogrammation épigénétique des cellules alpha dupancréas en bêta (produc-trices d’insuline) 1. Insulin in Social Media – Digital landscape
  • 12. 4 A smallnumberofanimalowners(0.5%)are present on the forums, discussing their pets’ insulintreatments, along with insulin storage recommendations.90% of these messages come from French sources.“ Féline a été diabétique une petite année, puis on a été tranquillependant 3 ans et là ça fait un peu plus d’un an qu’elle est de nouveausous insuline (en décembre il me semble). ” 16/02/2013“ My sister has a diabetic cat, called Charcoal. He is quite elderly now, about 14 I think. He’s been diabeticfor some years, after he got run over (he should be called Lazarus really). She gives him mixed insulin; it’sa bit hit and miss because he doesn’t always eat the same amount of food, but he does OK. ” 08/025 Other authors: other authors (1%) mainly includestudents asking questions on insulin functions, but alsoblog 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 Aminésdans une cellule (notamment musculaire). - Je connais déjà les effets de l’insuline sur le métabolismeinterne d’une cellule (protéosynthèse, glycogénogenèse…) ” 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 themain Cause of myocardial infarction (heart attack) ” 19/02People working in contact with diabeticsexpress concerns about the disease :“ Je suis agent de sécurité et au travail jedois accepter de prendre des boites jaunesd’insuline des diabétiques. L’une étant mal ferméeje me suis piqué avec une des aiguilles à insulineusagée. Concrètement, qu’est ce que je risque ? Lediabète se transmets à coup sûr ? ” 17/0212A weak signal to bestudied by animalhealth labs?What becomes of used needles and otherdisposables is a sensitive issue for pa-tients and those who are in charge ofproduct destruction.Simple devices minimising the associat-ed risks are among the expressed needs.ISMOR 1. Insulin in Social Media – Digital landscape
  • 13. 2. Insulin in Social MediaDiscussion pointsA / Discussion topics distribution on totalnumber of documents1 Nutrition“Nutrition” including diets, recipes, weight loss, specific food for diabetics and questions around carbcounting are addressed in this topic.Favorite topics: Carb count in the UK Vs. recipes in Francein the UK, Low carb diets, carb counting courses and general diet schemes and advice are frequentlymentioned, along with how to manage insulin treatmentwhen exercising.“I did get offered DAFNE and few other courses but couldn’tafford the weeks of work. I understand my health is para-mount but equally so is my employment in this current cli-mate.” 28/02“ Typical breakfast: natural Greek yoghurt 150g, few blueber-ries, sweetener. Sometimes slice low carb bread or rye breadas well. Omelette about twice a week, bacon once a week.(…)” 10/02809421232184170674524INJECTION DEVICESSOCIAL IMPACTBLOOD GLUCOSE MONITORINGPATIENT CAREADVERSE EVENTSSWITCHESPRODUCT INFO (CLINCAL & BUSINESS)NUTRITION13DAFNE UKMobility and digital innovation in the UK : dedi-cated mobile application for carb countingISMOR 2. Insulin In Social Media - DISCUSSION POINTSNutrition is at thecentre of patientsconcerns in France& UK
  • 14. 14“Yourweightwillbalanceoutbuttrytoeatahealthydiet and don’t overdose on insulin ”“I’m on Gliclazide which pushes up your insulin socan cause hypos, unlike metformin, not sure aboutthe other one you’re on. I do rugby training twice aweek and I’ve found that my bg usually goes up.” French forums, patients express interest invaried recipes aimed at acquiring a healthierdiet along with lowering the glycaemic index ofthe food they eat. A high proportion of pa-tients expressing themselves on this subjectare women posting on specialised forums (auféminin etc).“Mais j’ai entendu dire que les pommes de terreécrasées avaient un index glycémique plus impor-tant que lorsqu’elles étaient en morceaux. Peut-êtreest-ce pareil avec les pois chiches? S’ils sont mixésen houmous, ils auront plus d’impact sur notre tauxque entiers? ” 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 lookingat the Autumn before I’d get one.”,3111.msg48927.html“she has started me on Humilin I Kwik Pen. 10 units.The injection doesnt hurt and it was quite simple todo. I did my first injection last night myself (I inject myself at bedtime once a day) and apart from beingnervous about getting the needle into the pen and then into me with the correct dose, I managed quitewell and was proud that I managed it! ” diabétique Facebook pageThe French stay close to their reputation of “ fingourmet ”, they demonstrate a strong interestin having a healthy diet: 10 713 “ likes ” on theGourmet diabétique Facebook pageISMOR 2. Insulin In Social Media - DISCUSSION POINTS
  • 15. • 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 andmy pump fits into my bra. I don’t mind wearing Pjs to bed when I clip the pump to the bottoms. I go toGreece 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 MUCHprefer 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 veryconvenient for pulling out the pump and ckecking up or putting in instructions. ” 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 theirprofessional life.“You are certainly not alone in fearing hypos, I know that this can be a big and debilitating factor formanypeople.(…)Ihavehadafewhyposthathavebeenveryscary,butIamencouragedbythefactthat,even with the worst ones I experienced, I have been able to treat them successfully - very important as Ilive alone.” 01/02/2013b. The difficulty of managing diabetes at school is often mentioned by parents along with theimpact of diabetes within the family.“Unfortunatelyformylad,thiswaswaytooembarrassing.Hestarteddowntheslipperyslopeofskippinginsulin 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.” 26/02“+1aussiavecl’évocationdumanqued’estimedesoi(quipeutêtregénéraloucentrésurletraitementdudiabète), et les diabétos et soignants n’aident pas toujours” Blood glucose monitoring devices“Blood glucose monitoring devices” includes mentions of the meters, test strips, etc used forcontroling blood sugar levels...15ISMOR 2. Insulin In Social Media - DISCUSSION POINTS
  • 16. 16Patients 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. Soeasy to use.”“Et bien pour moi mon diabétologue m’a filé le glucomètre insulinx freestyle papillon. Quand je fais maglycémie, je rentre le nombre de glucides de mon repas il me calcul le nombre d’unité d’insuline et hoptout est enregistré.” calculation (Insulins on board) = Active insulin in the bodySize of the meter…“ Funny, it’s the IOB feature that’s the most important to me. I can calculate insulindoses 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.”,3149.msg49581.html#35834227_29“ I now have a sharps bottle in my desk at work so that doesnot travel with me. And after a little pleading with the Diabe-tes Nurse, my meter has reduced in size. So the bag I needhas reduced in size. As mentioned in my last post , this fitsinto a small handbag like this which is better than the toiletbag but not perfect.” 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 nownot advised by my doctors (NHS) and they say they have not been advising this method for three yearsnow. Any advice on why they stopped using this method and why wasn’t I ever informed. ”“Various blood tests done and all healthcare providers told me type 2. Went to hospital today and toldactually type 1 in “honeymoon period”. Does everyone get this ? I have looked at some past posts on thisandseethatdifficulttoputtimeframesonthissoI’mveryconfusedagain.ThedoctortoldmeI’dhavetogo on fast acting insulin and DAFNE course, then 5 mins later, a consultant told me to carry on as I am !” 25/02Precise blood glucosemonitoringand practi-cality of the deviceareconsidered essential to achievestable glucose levelsISMOR 2. Insulin In Social Media - DISCUSSION POINTS
  • 17. 17“Il a commencé par être suivi par un diabétologue et cela c’est mal passé. Il a arrêté le suivi et c’est autosoigné 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 .” 12/026 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 thatmay be linked to dose adjustment.“Malgré un controle stict des glucides et des cal-ories je pense que ses traitements: cardiqueset diabétiques sont responsablesde son récentproblème du foie: une quarantaines de “taches “ont été dédectées par scanner et IRM ” 22/02“ IdogettheoddlumpthoughfromtimetotimesoperhapsIneedtovarymore.I’malsointerestedintheidea that it could be too much insulin . ” 23/027 Switches“Switches” refers to a change of insulin.Switches between insulin is often due to side effects or inefficiency of the treatment“NothingparticularfoundbyGP/hospitalandtheytestedforlotsandwetriedchanginginsulin,newsitesand canulas. ”“Had previously tried a medium acting insulin think out was humalin, not sure though, but counteracteddp far too much causing early morning hypos . Was worth a try though” 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”fromtheFDAregardingitsapplicationsforapprovalofTresibaandRyzodeg,orinsulindegludec,onFriday.“ 2. Insulin In Social Media - DISCUSSION POINTS
  • 18. B / France & UK - mentions of associations,institutions,orpharmaceuticalcompaniesPharma companies and health institutions share equalvisibility in the discussions and are present in 2% of themessages.Patient associations are less often mentioned, undoubtedlybecausesomeofthediscussionsoccurontheirwebsitesandforums. A few initiatives from UK associations are mentioned.When compared to French messages, more references toinstitutions are visible in the UK; people complain about in-sufficient care and follow-up but show how much credibilitythey give the NICE (National Institute for Clinical Excellence)guidelines.1 Mostvisiblepharmaceuticalcompanies:NovoNordisk,EliLilly,Bayer,Sanofi,Roche,GSKa. 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 responseletter” 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. ” 11/02b. Other mentions of company names concern patients referring to product brand names andsome 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 ofpre-mixed insulins that are exactly that.”“ Mais avec le stylo Pendiq ®, le système évolue grandement et va plus loin ! (…) Pendiq ® est compatibleavec une large gamme d’insuline des laboratoires Lilly ®, Sanofi - Aventis ® et Berlin-Chemie ® ”“Oui, les pochettes lilly sont plutôt bien (pas très solides, mais les pharmacies en donnent gratuitementquand tu vas y chercher ton insuline).” mentionsInstitutions46 mentionsPharmaceuticalcompanies44 mentionsISMOR 2. Insulin In Social Media - DISCUSSION POINTS
  • 19. 2 Amongtheinstitutionsreferredtobypatientsontheforums,wecanlist:a. The NHS (National Health Service): most messages criticising the advice given by the NHS orthe 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 otherson how best to treat diabetes, ie carb counting. It’s all so confusing.”“BUT, after speaking to my GP & having friendswho have been declined I was told that thanks tothe new government & cost-cuts; pump therapyis no longer offered on NHS in England!! ” NICE guidelines:“Its the NICE guidelines on diabetes in pregnancythat you need. therapy [ie tablets or insulin]should be considered for women with gestationaldiabetesifdietandexercisefailtomaintainbloodglucose targets during a period of 1/2 weeks.” 18/02c. 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, forexample by giving you time off for appointments,or making sure you have enough breaks to eatregularly.” 24/02d. ANSM (Agence Nationale de Sécurité du Médicament) and HAS (Haute Autorité de Santé) arealso 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 : [...] (offset)/0 Cette liste a évolué depuis sa1ère publication (c’est heureux), il n’y a plus 77 médicaments, mais un total pas très différent.” 2. Insulin In Social Media - DISCUSSION POINTS
  • 20. 3 A number of associations are quoted in messages onforums 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 toprovide support, awareness, advocacy and action.” 05/02Diabetes UK:“Smoking and diabetes Almost everybody is aware ofthe dangerous link that smoking has with diseases suchas cancer, but are you conscious of its connection withdiabetes? Cigarettes contain more than 4000 chemicalcompounds and at least 400 toxic substances.” 06/02;American Diabetes Association:“According to the American Diabetes Association, 8.3percent of the U.S. population has diabetes. ” 13/02Diabetes Hand Foundation:“ Spare a Rose, Save a Child’ was an idea that emergedwhenasmallgroupofusrecentlymettodiscusshowthediabetes community could use social media for socialgood,” said Manny Hernandez , president of DiabetesHands Foundation. “We are asking anyone touched bydiabetes to show their support to help to save the lives ofchildren around the world.” 13/02JDRF (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. Theletter, which is being sent to doctors and hospitals across the country, reminds health professionals ofthe 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 bloodglucose might fall too low or too high.” 08/0220ISMOR 2. Insulin In Social Media - DISCUSSION POINTS
  • 21. 3. Benchmark betweenLantus,LevemirandHumalogA / Share of visibility on social media(Lantus, Levemir and Humalog)Total0 100 200 300 400LANTUSLEVEMIRHUMALOGSplit between positive, negative & neutral toneby productShare of voiceby country30 11411172016 55 2Numberof articles21ISMOR 3. Benchmark between Lantus, Levemir and Humalog
  • 22. 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 longlasting 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 ofFrench-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 alsothe most frankly positive or negative opinions. 12% of the comments are negative, referringmainly 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. ”,3162.msg49717.html 20/02Some generally negative comments about Lantus are made : “ I’ve never got on well with anything Elimade, and Lantus is evil too so thats Sanofi off my Xmas card list as well. ” 11/02“ A few years ago the German cost effectiveness body (NPH) reported that it could find no proof thatlong-acting insulin analogues, Lantus and Levemir, were better than human insulin in long-term out-comes in people with Type 2 diabetes. ” 01/02/2013“ I am on insulin humulin 70 30. 46 units and on humalog 10 units at lunch, Just tired of the injections wishcould find smthing beta. ” 08/02b. Positive messages often refer to the advantages of a particular insulin compared to onepreviously 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. ” 27/02“ I have simply found a background level of Lantus that gives me a relativly stable BM during the dayand just use Nova-Rapid to take care of my BM after I have eaten and funny enough my hbA1c has beenaround the 6 point mark for sometime now. ” 13/02ISMOR 3. Benchmark between Lantus, Levemir and Humalog22
  • 23. Lantus (insuline glargine) : des cas de cancers ont été détectés (et dont l’imputabilité à la Lantus estloin d’être certaine), mais il n’en reste pas moins que cette insuline apporte des avantages indéniablesaux patients par rapport à celles qui existaient avant  ” 26/02 “pas de pb d’insuline non plus (que ce soit avec la novorapid oul’humalog), je me sens “parfaite”  ” 25/02c. In neutral messages, patients share questions and advice on diabetes management andtreatments (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. ” 09/02/2013“ For example, if you are generally high in the morning, you might want to look at your levemir and see ifthe dose is sufficient. ” 22/02“Ideallyyouwouldwanttocorrectthat12........butitlookslikeyoumayneedmorelevemir.......3amtesting.......” 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 ” 27/02“ How are you taking your levemir Grainger ? It might be worth taking in two doses (splitting) so that youcan have less working overnight and more during the day of you need it. ” 06/02C/Benchmarkoftopicsaddressedperproduct(Lantus, Levemir and Humalog)1 Overall, nutrition is thetopic most often associatedwith 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), andit took a loooong time to get me up to the right dose.Then I saw a dietitian who explained all about carbcounting and encouraged me get the book Carbs &Cals (I actually got the app for my Blackberry). ” 19/02ISMOR 3. Benchmark between Lantus, Levemir and Humalog050100Productinfo(clinicalandbusiness)BloodglucosemonitoringdevicesNutritionInjectiondevicesSwitchesPatientjourneySocialimpactAdverseeventsLANTUSLEVEMIRHUMALOG23
  • 24. 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 weightvery quickly. I hated being on the injections, absolutely hated it and fought tooth and nail to be allowedoff them. ” 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 thenfurther still to 1 unit for every 10g of CHO. So you need to know that as a starting point. Have you spokento your diabetic specialist or nurse about this? There may be a DAFNE course (or something similar) inyour area that you can go on that will teach you all about it. ” 21/02c. 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 àfait normal autour de 1g par litre de sang Je précise que chaque jour je fais environs 10km sur mon vélod’appartement, je sais que le sport fait réduire le taux de sucre dans le sang. Alors qu’en pensez vous ?Suis je vraiment diabétique ? ” Injection devices is the second most frequent topic asso-ciated with insulin, although it is in 1st place on French socialmedia, where pumps are mentioned in nearly half of thosemessages 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 insulineanimas.” 21/02Main 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 swingingeven higher in the morning. I’ve been pumping for 18 months now and my control is excellent and I wouldnever be without my pump, BUT the biggest difference was the carb counting. ” 19/02b. 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) ” 15/0224ISMOR 3. Benchmark between Lantus, Levemir and Humalog
  • 25. “ 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. ” 05/02“ I use a Lantus Solostar pen which contains 3mL in total. . The strength is 100u/mL so the pen contains100 x 3 = 300 units. The graduations marked on the pen are from 300 to 0, so if I dial up 60, that is 60units and NOT 60/3 or whatever you seem to think it is ” 09/02c. 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 binthen I won’t fill my 1 litre sharps bin too quickly. That way I can prolong the hassle of getting rid of a fullbin ” The proportion of messages related to “switches” is moreimportant for Levemir than for the others.Actually,switchesbetweenLantusandLevemiraremostfrequentlyreported.SwitchingfromLevemirbacktoLantusismentionedasitinvolveslessfrequentinjectionsbutsomepatientsreactbettertoLevemir.“ 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 ” 26/02“ Ineverfound Lantus tosplitsatisfactorilyformesoIswappedto Levemir ” 28/0225ISMOR 3. Benchmark between Lantus, Levemir and Humalog
  • 26. 4. Pharmacovigilance& DiabetesePotential cases of pharmacovigilanceLantus / Levemir / HumalogAmongmessagesmentioninginsulin,somerefertosideeffectsorinefficiency.Misusesoroverdosescanalso be mentioned.These messages are potential pharmacovigilance cases that are transmitted to the pharmaceuticalcompanies 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.26ISMOR 4. PHARMACOVIGILANCE & DIABETESLANTUSLEVEMIRHUMALOGPotential PV casesTotal number of documents(excluding potential PV cases)0 50 100 150 200 25010%4%8%
  • 27. Potential PV cases are generally reported by the patient but parents of patients can also be thecase 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 injectin my back in the area above my buttocks but very low down the back, basically the handles region . Ihave never been told to inject there before but will give it a go tonight.”“maredesespiqurelantusvictozaquiafaitsoneffetunmomentetpuisplusrienhemoglobinea9.2quoifaire” 09/02/2013“moi c’était la lantus qui brûlait (et qui brûle tout le monde ou presque)” 25/02“Depuis vendredi lorsque je m’injecte de l’insuline rapide (Humalog) ça me brûle pendant 10 minutes en-vironetparlasuiteàchaqueinjectionscelamefaitunbleuaveclepointd’injectionrougevivequecesoitau bras ou au ventre” 24/02“When I did use levemir it caused alot of hypos during the day and early afternoon even when reducingqa. So, stopped the levemir and rarely had hypos.” 08/0227ISMOR 4. PHARMACOVIGILANCE & DIABETES
  • 28. Methodological appendixISMOR(Insulin in Social Media Original Research) was carried out after collectingand analysing discussions throughout the month of February on over 200 socialmedia sources, of which 50 are dedicated to diabetes.After an automatic download based on queries, the documents were sorted andanalysed by LexisNexis Business Information Solutions Life Sciences analysts.The team have integrated over 10 years of work in France and Europe into thestudy 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*Spelling mistakes have not been proofed from original authoring in social media (blogs, forums, ...)