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HOPER study
HIV Original Pharmaceutical
E-reputation Research
June 5th
, 2014
2
Preface
For our fourth edition, Doctors 2.0 & You will again provide a forum for a
well-informed discussion amongst all stakeholders: patients, professionals,
industry, public sector about the  use of Social Media, Mobile Applications,
Serious Games, Connected Objects. This information is presented through
real-life examples in prevention and disease conditions.
To complement the program, each year, Doctors 2.0 & You chooses to-
gether with LexisNexis Business Information Solutions, a theme to study,
based on the strategic importance of the area in healthcare. The resulting
report is a key element  of the partnership between Doctors 2.0 & You
and LexisNexis Business  Information Solutions.
After diabetes in 2013 with the ISMOR or Insulin Social Media Original Research, we have turned together
to HIV, with  HOPER,  “HIV ORIGINAL PHARMACEUTICAL E-REPUTATION RESEARCH”.  HIV has
been one of the most active areas in healthcare on the web, from the early days to now. We felt that
participantswouldbenefitfromalookatthekindofharddatathatLexisNexisBusinessInformationSolutions
can produce regarding the activity of HIV digitally, patient profiles, information about drugs….
TheresultsoftheHOPERreportareindeedrichanddemonstratethediversityandquantityof information
available from user-generated sources. The importance of this should not be under-estimated. HOPER
will provide many avenues for improved collaboration amongst healthcare stakeholders.
We sincerely thank the team for their hard work in putting the study together and look forward to the
conversations we will all engage in together.
 
Denise Silber,
Founder Doctors 2.0 & You
Basil Strategies
Introduction
Hoper is the first study on social media networking & HIV in 2014. The Hoper study col-
lected and analyzed more than 19,000 web documents over more than 1,400 French
web sources during March 2014, including about 80 sources specialized in virology
and infectiology.
Hoper outlines the French HIV digital ecosystem and provides insights about its
stakeholders:
• Highlights on the key online channels, stakeholders and topics visible over the period,
• Focus on 3 major HIV e-patient profiles,
• Visibility and e-pharmacovigilance trends for 3 leading HIV drugs,
• Comparison of US and French digital/social/mobile initiatives of 3 pharmaceutical
laboratories, in this therapeutic area.
The outcomes of the study can help pharmaceutical laboratories to identify where
in the French HIV digital ecosystem there are opportunities and room for improving
visibility, reputation and digitalness of their brands and products and better
reaching their target audiences through relevant online touchpoints.
The Hoper report 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 insights into
the public debate around HIV in the web and the social media. For responses on specific
questions in this area, please contact us and we will be very pleased to help.
3
HOPER
HIV Original Pharmaceutical E-reputation Research
June 5th
, 2014
4
1. HIV IN DIGITAL LANDSCAPE
A/ HIV: overall visibility on internet, trends and buzzes
B/ Twitter, forums, websites, press… Where is the media coverage?
C/ Focus on Twitter
D/ Focus on forums
2. E-PATIENTS’ PROFILS AND DISCUSSIONS
A/ Experienced patients providing advice
B/Long-termpatientstrying adrug regimenreduction
C/Unexperiencedpatients
D/Mostdiscussedtopics
3. STAKEHOLDERS PRESENCE
A/ Associations’ commitment
B/ Personalities’ mobilization
C/ Institutions’ roles and activities
D/ Laboratories’ share of visibility
4. E-PHARMACOVIGILANCE: BENCHMARK
OF 3 ANTIVIRAL DRUGS
5. DIGITAL INITIATIVES IN FRANCE & USA
A/ Comparison of digital initiatives between France and USA
for three laboratories
B/ USA: Branded websites and unbranded digital initiatives
C/ FRANCE: Unbrandred websites and digital initiatives
6
8
9
10
11
12
13
14
16
17
18
19
20
5
23
24
25
HIV
>98% 1 %
O,5%
1. HIV IN DIGITAL LANDSCAPE
A - HIV: overall visibility on internet,
trends and buzzes
Among 19,000 web documents
collected in March 2014:
6
HOPER - HIV Original Pharmaceutical E-reputation Research
>98%The therapeutic area (HIV, sero-
positivity, AIDS, etc) is the most
discussed topic with several hun-
dredsofnewdocumentsperday,rep-
resenting more than 98% of the vol-
ume of documents over the month.
1%CROI 2014 - (Conference on Retroviruses
and Opportunistic Infections) only rep-
resents 1% of the volume of documents.
The conference was mostly covered
intheonlinepress,onblogs,forums
and Twitter, at the beginning of
March.
0,5%3 HIV drugs - Presista, Isentress
and Atripla - and their active prin-
ciples represent 0,5% of documents.
Their visibility is limited to forums where
patients share their experience with HIV drugs
and specialized websites.
6
1
2
3
4
5
0
200
400
600
800
1,000
1,200
1st
march
5march
10march
15march
20march
25march
30march
7
HOPER - HIV Original Pharmaceutical E-reputation Research
1.Oscars: MatthewMcConaughey andJared
LetoreceivedAcademicAwardsfortheirperfor-
mances in the film Dallas Buyers Club . Several
tweets have also passed on Jared Leto’s speech
anditssupport tothewholeHIVcommunity.
2. Second baby born with HIV cured. This re-
mission is explained by starting HIV treatment
just few hours after the child’s birth.
3. Tweets related to the evening launch of
Sidaction 2014 with the intervention of Line
Renaud and the participation of Jean-Luc
Romero.
4. Tested in female monkeys, a new vaginal gel
could protect women against HIV even if applied
hoursaftersex.
5. Persistent buzz related to HIV transmission
betweenwomen.
6.Tweets related to
#Sidactioncampaign2014.
BUZZ OVER TIME (March 2014)
Facebook - 4 docs
Blogs - 55 docs
National
Press - 161 docs
Websites - 459 docs
Forums - 1,108 docs
Twitter - 17,236 docs
91%
HOPER - HIV Original Pharmaceutical E-reputation Research
Twitter and forums are the main online
agoraswherepublicconversationsrelated
to HIV take place (more than 91% of the
19,000 documents) !
TWITTER is much more represented than
the other types of sources. However, a huge
amount of off-topic” tweets (up to 80%)
mention AIDS/HIV in a “humorous” or even
disparaging way.
Besides, AIDS associations are very active
on Twitter and some pieces of news related to
HIVhavealsobeenwidelyretweeted(forexample
Oscars to Dallas Buyers Club’s actors, etc).
• FORUMS play a key role in the French HIV digital landscape. A
few forums specifically focused on HIV, such as Seronet Forum
andSidawebForum,are“THE”onlineplaceswhereFrenchpatients
share their experience and disease management tips. Lively conver-
sations take place there on forums. Some of these patients have been
active members for years.
• WEBSITES include web portals dedicated to HIV (Seronet, Aides, etc), health-
dedicated sources (covering current news on HIV therapies, HIV prevention, HIV epi-
demiology, etc) and general information sources (either covering current news on HIV or
quoting HIV in various contexts, for example health challenges in Africa).
• The visibility of Aids/HIV in the NATIONAL PRESS is mostly a matter of occasional “scoops”: Oscars to Dallas Buyers Club’s
actors, therapeutic innovations (anti-HIV gels), controversies (drug consumption rooms, etc).
• A few BLOGS such as « Le blog des séropositifs en colère » or « Le blog de JL Romero » are rather active.
B - Twitter, Forums, websites, press…
Where is the media coverage?
9
HOPER - HIV Original Pharmaceutical E-reputation Research
Ranking of
these accounts
by number
of followers
(04/29/14)
Top 10 Twitter accounts
according to number of tweets
related to HIV over the month of March 2014
0
60 tweets50 tweets40 tweets30 tweets20 tweets10 tweets
Elus contre le SIDA - 1,493 fol.
Jean Luc
Romero
21,927 followers SidaInfoService - 2,277 fol.
COCQSIDA - 410 fol.
Essai VRI - 110 fol.
Directeur des soins - 3,204 fol.
Association
AIDES
99,141 followers
Recherch0ns
6,645 followers
Séropositif libéré - 15 fol.
Elus contre le SIDA
Jean-Luc Romero
Association AIDES
Recherch0ns
SidaInfoService
Mutuelle Info
COCQSIDA
ESSAIVRI
Directeur des soins
Séropositif libéré
•Aidsactivistandelectedrepresentative@JeanLucRomeroandhisassociation
@ElusContreSida with nearly 30 % of the tweets have been very active, sup-
porting a petition asking for non-discriminatory funeral services.
• Through the dedicated account @essai_VRI, the Vaccine Research Institute
announced the recruitment of 100 volunteers to test a new HIV vaccine.
•Associationaccounts(@assoAIDES,@SidaInfoService)tweeted/retweeted
news related to HIV (surveys, CROI’s and research highlights, prevention and
test initiatives, political actions, etc).
•Otheraccountslike@recherch0ns,@mutuellesinfoand@DirecteurdesSoins
mainly passed on information picked up in the press or on health-dedicated
websites.
C - Focus on Twitter
Doctissimo Forum
(416 messages)Others - (75 messages)
Atoute - Forum - (20 messages)
Forum gay - (26 messages)
Boursorama - Forum - (34 messages)
Au féminin - Forum - (39 messages)
Forum Santé Médecine - (53 messages)
Hépatite - Forum - (61 messages)
Forum Jeuxvideocom - (66 messages)
Sida Web - (101 messages)
Seronet - Forum
(170 messages)
10
HOPER - HIV Original Pharmaceutical E-reputation Research
• Doctissimo is far the major French source of reference where nets users seek advice after a
“risky behavior”. Testing/diagnosis and prevention are the most discussed topics. 40 % of the mes-
sages come from this forum. Similar discussions occur on forums like Forum Santé Médecine, Forum Au
Féminin (with a predominance of female net users) and Forum AToute.
• HIV diagnosed patients rather express themselves on Seronet and Sida Web forums. The impact
of the disease and/or the therapy on their daily life is the most discussed topic.
•MostmessagesfromForumJeuxVidéoquoteHIV/aidsina“humorous”ordisparaging way.
Top 10 forums according to number of messages
related to HIV over the month of March 2014
Generalhealthforums,HIV/hepatitisforums,LGBTforums,youngster
forumsandfeminineforumsarethemostrepresentedtypes,with
strong specificities regarding HIV conversation content.
D - Focus on forums
11
2. E-PATIENTS’ PROFILES AND
DISCUSSIONS
A - “EXPERIENCED PATIENT
PROVIDING ONLINE ADVICE
ABOUT HIV”
Menorwomen,typically35ormoreyears-old,withalongexperience
withHIV,withacontrolleddisease,givingadvicestoyoungerpeopleandothernet-usersregarding
unsafesexpracticesandtheimportance togettested forHIV.
• Aware of policies and practices established by hospitals or other healthcare professionals to manage
eithernewpatientsorolderoneswhoneeda readjustment oftheirprescriptionmedicines.
• In general, a cultivated person, belongs to higher social categories, with advanced medical knowledge.
Fightsprejudicesassociatedtogenderidentity, ethnic originsorsexual orientation.
• Able to put things into perspective and calm other net-users’ anxiety by providing factual data. Easily
accessible, especially to newly diagnosed patients and appreciated by net-users for his/her patience
and ability to explain complex data, and for a wider open-mindedness than healthcare professionals.
• Participates every day in online discussion threads and provides recommendations to other net users,
butremainshumbleandrespectfulofthehealthcareprofessionals.
•Shareslinkstoonlinecontent,sometimescorporatelinks.
« Un test de dépistage du VIH donne officiellement une sérologie définitive à partir de quarante-
deux jours après la dernière prise de risque. » 04/03/2014
http://forum.doctissimo.fr/doctissimo/infections-sexuellement-transmissibles/test-vih-sujet_166267_1.
htm#68726966_61
« 1) Une séroconversion tardive, c’est une séroconversion qui intervient après quatre semaines,
tu es loin de ça. 2) Cela veut dire plein de choses. Les miens sont enflés quand je suis patraque,
quand j’angoisse, quand j’ai de la fièvre, quand j’ai une infection, quand je ne sais pas... C’est à un
médecin de répondre à cette question. 3) Il ne fait que dire ce que tout le monde devrait savoir
et que tu sais aussi mais que tu es incapable de rationaliser. » 06/03/2014
http://forum.doctissimo.fr/doctissimo/infections-sexuellement-transmissibles/peur-extrem-sujet_165557_1.
htm#68837590_11
HOPER - HIV Original Pharmaceutical E-reputation Research
« N’importe quoi ! Sans paniquer, il est concerné par le fait qu’il a pris un risque. On ne se base pas
sur la sérologie d’autrui pour en déduire sa propre sérologie. Tu fais quoi de la fenêtre sérologique ?
De plus, ils ont tous les deux pris des risques. Ils doivent se faire dépister tous les deux. On fait les
choses correctement ou on ne les fait pas car ça ne sert à rien. » 13/03/2014
http://forum.doctissimo.fr/doctissimo/sida/preservatif-casse-acte-sujet_165932_1.htm#69585414_58
«  Tous les jours sur ce topic, on trouve des gens qui somatisent. Tu es le gagnant du jour.  »
03/03/2014
http://forum.doctissimo.fr/doctissimo/sida/stress-somatisation-sujet_165906_1.htm#68741841_127
« Appelle Sida info service, qui te dira s’il y a des précédents de contaminations de ce type (je n’en
ai jamais entendu parler). C’est un accident du travail.. Que t’a dit la personne qui t’a soigné ? »
02/03/2014 http://forum.doctissimo.fr/doctissimo/sida/risque-sujet_165904_1.htm#68741869_142
B - “LONG-TERM PATIENT
TRYING A DRUG REGIMEN
REDUCTION”
Patient with an extensive experience in HIV drugs, interested in
reducing his/her therapeutics in order to avoid adverse events or
simply to detoxify his/her organism.
•Frequentlydealswiththeresistanceofphysicians,relatives,friendsorotherpatientsforwhichreducing
thetreatmentisnotagoodwaytomanagethedisease, especiallywhenit iswell controlled.
•Hasgenerallygoodbloodtestresults,agoodimmunityandhasfrequentlyanundetectableviral load.
• Decides to reduce his/her treatment because of positive testimonies from other patients posted on
forums or blogs. Several of them mention the « ICCARRE method », which consists in reducing the dos-
age after a strong initial treatment.
• Sometimes, this method is first tried during travels, holidays or week-ends and a number of patients
notice that this break does not change their blood test results, so they do not inform their physicians
about it. When the patient reiterates this break or decides to lastingly reduce the treatment, then the
physicianisinformed.Thismethodisappliedindifferentways:bytakingthedrugsonlyafewdaysaweek
or by reducing the daily dosage.
« Seulement maintenant, après 3 ans de Truvada-Isentress, non seulement je ne dors toujours
pas, ou le sommeil n’est pas réparateur, mais les lypodystrophies sont devenues insupportables,
j’enfledel’abdomenetdesseins,unehorreur,toutcequejemettaisavantmeboudine:-(Lebilan
est nickel 1300 CD4, charge virale toujours indétectable et c’est le problème: ma toubib ne tient compte
que de ça! Donc, pour ma consult de Mars, vu que j’ai tout essayé, je vais lui mettre le marché en main:
soit on essaie un allègement type 3/7, soit j’arrête tout! Ca fait 10 ans que je gobe bien tout ce que l’on me
donne, je suis super observante, mais je connais mon corps: au bout de 3 ans de la même combinaison,
les résultats sont toujours ok, mais moi, plus du tout! » 02/03/2014
http://www.seronet.info/sondage/au-cours-des-12-derniers-mois-jai-deja-pratique-lallegement-de-mon-traitement-
arv-65652#68342151_1
HOPER - HIV Original Pharmaceutical E-reputation Research
12
« Après une année de TRI je suis passé, avec l’accord de mon médecin à 6jours/7. ET c’est génial!
Mon toubib me dit que tout le monde est largement en surdosage... Bon on verra si on passe en
5/7 bientôt. Déjà un jour de moins ça soulage psychologiquement et le corps bien sûr! Je prends
Eviplera. » 02/03/2014
http://www.seronet.info/sondage/au-cours-des-12-derniers-mois-jai-deja-pratique-lallegement-de-mon-traitement-
arv-65652#68342151_1
« Soledad j’ai d’abord commencé de 7/7 à 5/7 de moi-même car je suis sous ATRIPLA depuis si
longtempsavecdesrésultatsidentiquesdepuistantd’années(avecles3moléculesquilecomposent)!
Quej’aipenséquejenecourraisaucundanger...Leslabosn’ontjamaisfaitladifférencepourla
posologieentreunenfant(ouado),unefemmede40Kg(environ)etunhommede80Kgcommemoi!!!
Jemesuisditqu’ilsavaientduunpeutforcersurlesdosages,histoiresd’avoirdesrésultatsimmédiatssansse
préoccuper des effets secondaires! » 03/03/2014
http://www.seronet.info/sondage/au-cours-des-12-derniers-mois-jai-deja-pratique-lallegement-de-mon-traitement-
arv-65652#68342151_1
« Vous oubliez souvent de nous dire si vous pratiquez un allègement de traitement avec ou sans
assentimentet/oucontrôlemédical.Jevousrappellequenousnesommespasmédecinsetque
pour ma part mes 2 dernières infectiologues sont contre un traitement a la demande. D’après
ellesc’esttroprisqueetatermeçaaugmentelesrésistancesetçafaitrepartirlachargevirale.C’estparfois
indiqué à certains patients qui ont 20 ans de tri derrière eux pour soulager un moment mais pas tout le
temps leur corps mais AVEC accord et contrôle d’un médecin. » 04/03/2014
http://www.seronet.info/sondage/au-cours-des-12-derniers-mois-jai-deja-pratique-lallegement-de-mon-traitement-
arv-65652#68342151_1
C - “UNEXPERIENCED PATIENT
RECENTLY DIAGNOSED”
Patient recently diagnosed, with a poor experience with HIV. Feeling
lost, confused, facing a difficult situation, needing help regarding
the disease, the treatment.
• In the case of a primary infection, has to deal with several drugs simultaneously.
• Often searches the Internet for information on drug treatments and the evolution of the disease.
• Feels insecure and uncomfortable with the treating physician.
• Generally afraid of various aspects: blood test results (especially CD4 value), viral load, adverse events
associated with the drugs that will have to be taken.
•Feelsdepressed,ashamedandguiltyinthefirstdaysafterdiagnosis,almosttothepointofwantingtodie.
•Shockedandbarelyableto«understand» and«absorb»explanationsprovidedby healthcareprofessionals.
• Needs time to accept the new condition and the useful advice provided by other patients.
HOPER - HIV Original Pharmaceutical E-reputation Research
13
« Mon médecin généraliste qui est aussi infectiologue m’a sorti que tant que je n’aurai pas fini
la pré-infection, je resterai sur ce que j’ai. Génial on discute bien mdr.... Heu... Bon ok à la limite
je comprends. Mais en juin quand ce sera terminé, je serais toujours à 3 prises et je n’en veux
qu’une! Je suis comme tout le monde, ça me gonfle d’avaler des cachetons surtout que j’ai la dose mais
moins importante qu’avant. » 01/03/2014
http://www.seronet.info/billet_forum/un-prise-par-jour-66145#68323689_3
« Pour ma part j’ai commencé un traitement avec une PCP, des T4 à 24 et une CV très élevée.
Allergique au Bactrim, je suis à ce sirop bien connu, qui est lui une vrai contrainte, surtout en dé-
placement ou en sortie au restau. Pour le reste, mes prises de cachet ne sont que peu de chose
et pourtant ! Avec une MAC identifiée en mars, je suis sortie de l’hosto avec le matin 3 ARV (1 Truvada,
1 Isentress) et un traitement antibiotique anti MAC (10 cachets ou gélules) + 1 pour le diabète, 1 pour
l’hypertension, 1 pour le fer. Le soir, 1 pour la MAC, 1 Isentress, 1 pour le Fer, 1 pour le diabète et 1 piqure
d’anticoagulant pour une embolie. Sans oublier ce sirop matin et soir. Je me trouvais heureux de n’avoir
rien le midi ! » 05/03/2014
http://www.seronet.info/billet_forum/un-prise-par-jour-66145#68323689_3
« Toujoursest-ilquemalgrétoutcequej’aipuliredepositifsurcettemaladie,jesuistrèsaffecté,
car ce qu’on ne connait pas nous terrifie... Je pleure beaucoup, malgré le soutien que je peux
recevoir de mes amies et de mon partenaire. Je m’en veux tellement de lui avoir imposé cette
situation. Il a décidé d’affronter cette épreuve avec moi, je lui en serai éternellement reconnaissant. »
07/03/2014
http://www.seronet.info/billet_blog/juste-diagnostique
« Je l ai vu hier et j’avoue être encore sonnée.. donc il m a donné plusieurs infos mais c’est encore
confus.. » 05/03/2014
http://forum.doctissimo.fr/doctissimo/sida/doute-fiabilite-depistage-sujet_165872_1.htm#68855832_16
HOPER - HIV Original Pharmaceutical E-reputation Research
14
Prevention
Impact on daily life
Screening test diagnosis
Efficiency
Immunity viral load
Coinfection comorbidity
Adverse events
Drug interactions
Switch
Price
0 100 200 300 400
D - Most discussed topics about HIV
The most discussed topics, by the number of documents:
• PREVENTION is the most recurrent topic in HIV digital landscape with 30% of documents.
- on websites and in the press, prevention was mainly evoked in the context of the upcoming Sidaction
campaign (scheduled at the beginning of April) and along with several buzzes focused on means of
prevention of HIV transmission (start of clinical trials on a vaginal ring that might protect from infec-
tion, debate on drug consumption rooms, etc)
- on forums the message is more straightforward i.e. “use a condom if you don’t know the serological
profile of your partner”
- Twitter users either pass on prevention initiatives or spread information on new prevention
methods or advances on HIV-vaccine research.
• IMPACT ON DAILY LIFE topic with 25% of documents mentions contamination by HIV in a sexual
context. Difficulties to announce seropositivity to loved ones or to accept a HIV+ diagnosis are
also often discussed on forums.
• SCREENING/DIAGNOSIS is also a very visible topic with 13% of documents as epidemiologic data
were published and tweeted: victims of aids on the rise in Japan, HIV contamination of drug users in Sen-
egal, young women more contaminated than men in France, etc.
• DRUG EFFICACY was strongly fueled by the media coverage of various news highlighting the efficacy
of antiretroviral drugs in the context of the CROI 2014 conference: start of clinical trials on a vaginal
ring containing tenofovir, case of HIV+ newborn “cured” by a tritherapy, results of the Partner Study.
• IMMUNITY/VIRAL LOAD corresponds to news on development of an HIV-vaccine and the cover-
age of the CROI 2014 conference; results from a US National Institute of Health study on gene-editing
offering new hope in controlling the virus without drugs was also picked up by the French press and
on Twitter.
Prevention, impact of HIV on daily
life, and screening/diagnosis of the
disease are the 3 most discussed
topics.
15
Manual coding (sample of 1,500 documents)
3. STAKEHOLDERS PRESENCE
A - Associations’ commitment: Sidaction and
AIDESarethemostmentionedandalsoveryactiveonline
SIDACTION
The 20th
edition of SIDACTION, in April, wasalreadywidelycoveredon
socialmediaandotheronlinemediainMarch.Itwasanopportunity
forseveral media to communicate about prevention and past
breakthough discoveries in the area of HIV.
AIDES
• Frequently communicates on the prevalence of
HIV in France or other countries and on prevention /
diagnosis actions taken throughout the country.
Aides announced the launch of new clinical trials
and the publication of major results.
• Recently Aides strengthened its partnership
with the Archives Nationales in order to preserve
the archives of the association.
• Aides faces (like Act Up) a restructuring plan due to
alackof funding.
• Aides was also mentioned in articles on the
condemnation of a HIV+ man accused of having inten-
tionallyinfecteditswife.
• Others cited with fewer documents: Médecins Du Monde,
MédecinSansFrontière,Act-up,CRIPS,Tinder,SidaSOS,
Coalition Plus, Inter-LGBT
HOPER - HIV Original Pharmaceutical E-reputation Research
Personalities
775 docs
Associations
1,030 docs
Institutions
424 docs
Labs
82 docs
12 3 4
16
Associations, personalities
and institutions are leading
the discussions around HIV
onthewebandsocialmedia.
Thepharmalabsarefarbehind.
Sidaction
(298 documents)
Aides (194 docs.)
LGBT (87 docs.)
Sida Info
Service (84 docs.)
Associations
Afrique
(76 docs.)
Others
(291 docs.)
Jean-Luc Romero
(185 documents)
Others
(161 docs.)
17
B- Personalities’ mobilization:
JL Romero and his association of local politicians
mobilized against AIDS and serodiscrimination
JEAN-LUC ROMERO
Jean-Luc Romero is a French politician who was among the first to reveal its seropositivity. He is also
president and founder of the ELCS Association (« Elus Locaux Contre le Sida / Locally Elected politi-
cians Against AIDS), president of CRIPS IDF and member of the National Council of AIDS. He is involved
in prevention campaigns, especially in Paris, and more generally in the fight against homophobia and
serophobia in daily life.
ELCS
ELCS association is fighting for equal access to freedom of movement regardless of HIV status, for
non-discriminatory funeral services, for free condoms, for improving risk reduction measures and for
allowing homosexual people to donate blood.
J. LETO
M.McCONAUGHEY
Very high visibility for Jared Leto and Mattew McConaughey during the Oscars Event with the awards
received for their performance in « Dallas Buyers Club » movie.
MARISOL TOURAINE
French Health Minister Marisol Touraine did not
specifically communicate about HIV, but she
was challenged on social media to take a
clear position in favor of non-discriminatory
funeral services.
OTHERS
Others cited in fewer documents:
Anne Hidalgo, Laurent Fabius,
LineRenaud,EltonJohn,Pierre
Bergé, Jean-Louis Touraine,
EmmanuelleCosse.
HOPER - HIV Original Pharmaceutical E-reputation Research
LGBT
Sida Info
Service (84 d
Associations
Afrique
(76 docs.)
Others
(291 docs.)
Jean-Luc Romero
(185 documents)
Jared Leto (145 docs.)
Elus locaux
contre le sida (109 docs.)
Matthew
McConaughey
(108 docs.)
Marisol
Touraine
(67 docs.)
Others
(161 docs.)
C- Institutions’ roles and activities:
national institutions more visible than international
ones, IGAS and ANRS at the forefront
IGAS
The IGAS (General Inspectorate of Social Affairs) and the Aids National council both recom-
mended to remove the discriminatory prohibition related to HIV positive status for funeral services.
Their position was widely covered on Twitter.
ANRS
The ANRS (National Agency for Research on Aids) is mainly mentioned in the context of clinical trials
(prime-boost vaccine trial, functional remission observed in ANRS-Optiprim trial involving recently
diagnosed patients, early treatment in newborns, etc.).
INSERM
According to the INSERM, drug injection rooms could
help reducing HIV transmission. The INSERM also
launched a survey to understand how HIV can
impact the daily life of women.
OTHERS
Others cited in fewer documents:
Onusida, Centers for Disease
Control and Prevention,
Corevih, National Academy
ofPharmacy,Unesco.
Jean-Luc Romero
(185 documents)
Jared Leto (145 docs.)
s locaux
tre le sida (109 docs.)
hey
rs
ocs.)
Inspection
Générale
des Affaires
Sociales
(106 documents)
Agence
Nationale de
Recherche
sur le Sida
(99 docs.)
Inserm (55 docs.)
Conseil
national
du sida
(51 docs.)
Others
(112 docs.)
HOPER - HIV Original Pharmaceutical E-reputation Research
18
D- Labs’ share of visibility:
GlaxoSmithKline, Gilead and Merck on the podium
GSK
• Promising preven-
tive results published
regarding monthly in-
jection of long-lasting
GSK744 in macaque
monkeys;aclinicaltrialin
humans will be launched
soon.
• LATTE Study: a combina-
tion of GSK744 and rilpi-
virine shows an efficiency
similar to that of a standard tri-
therapy for long-lasting viral sup-
pression.
GILEAD
• In France, withdrawal of a batch of Viread due
to potential rubber residues.
• Market launch of Stribild, the first once-daily 4 drug combo
treatment for HIV in a single tablet.
MERCK
• Clinical trial results evaluating experimental drug in HIV/HCV coinfected patients.
•DevelopmentofMK-1439,aninvestigationalnucleoside,potentiallyinterestinginthecontextofresistance
to other nucleosides as efficient as Sustiva and with a higher tolerance.
HOPER - HIV Original Pharmaceutical E-reputation Research
19
GSK, Gilead and Merck are by
far the three most visible phar-
maceutical companies men-
tioned in relation to HIV.
Their visibility is essen-
tially linked to preclini-
cal or clinical trials
(a consequence of
communications
around the CROI
congress).
GSK
(18 documents)
Gilead
(17 documents)
Merck
(13 documents)
BMS
(9 documents)
Janssen
(6 documents)
Roche
(5 documents)
Theradiag
(5 documents)
AbbVie
(4 documents)
ViiV
(3 documents)
Boehringer
(2 documents)
Number of documents published between
03/01/2014 and 03/31/2014, excluding Boursorama
HOPER - HIV Original Pharmaceutical E-reputation Research
4. E-PHARMACOVIGILANCE:
BENCHMARK OF 3 ANTIVIRAL
DRUGS
A-Potentialcasesofe-pharmacovigilance:
Prezista*, Isentress* and Atripla*
Prezista and Isentress are twice as visible online as Atripla. The 3 drugs display similar high
proportions for potential online pharmacovigilance cases.
For the three medicines, about 1/3 of messages correspond to potential e-pharmacovigilance
cases (33% for Prezista, 29% for Isentress, 37% for Atripla) – a proportion much higher than in other
therapeutic areas such as diabetes or level 1 analgesia where potential PV cases are typically in the range
5 to 10% of messages.
Almost all these potential e-pharmacovigilance cases were identified on Seronet discussion forum.
A total of 24 potential
online PV cases for
the three drugs
20
30docs
PREZISTA
28docs
ISENTRESS
!
42
%
25
%
33
ATRIPLA
• Lower bone density of babies
whose mothers took Tenofovir
• Dizzyness
• Psychological side-effects
• Drug regimen reduction cases
ISENTRESS
• Excessive tiredness /
exhaustion sleep disorders
• Hyperthyroidy
• Lipodystrophy
• Thinness
PREZISTA
• Sleep disorders, anxiety,
weird dreams
• Difficulties concentrating
• Lipodystrophy
• Tiredness
PHARMACOVIGILANCE
MESSAGES
16docs
ATRIPLA
30docs
PREZISTA
28docs
ISENTRESS
!
42
%
25
%
33
%
ATRIPLA
• Lower bone density of babies
whose mothers took Tenofovir
• Dizzyness
• Psychological side-effects
• Drug regimen reduction cases
ISENTRESS
• Excessive tiredness /
exhaustion sleep disorders
• Hyperthyroidy
• Lipodystrophy
• Thinness
• Headaches
PREZISTA
• Sleep disorders, anxiety,
weird dreams
• Difficulties concentrating
• Lipodystrophy
• Tiredness
PHARMACOVIGILANCE
MESSAGES
16docs
ATRIPLA
*3differenttypesofdrugsselected:aproteaseinhibitor(Prezista),areversetranscriptaseinhibitor(Atripla)andanintegraseinhibitor(Isentress)
21
B-PotentialonlinePhamacovigilancecases:
selection of patients comments
ATRIPLA
« Parce que Atripla chez un nombre non négligeable de pa-
tients à provoqué des effets secondaires psy importants et
parfois graves. » 24/03/2014
h t t p : / / w w w. s e r o n e t . i n f o / b i l l e t _ f o r u m / s t r i b i l d - v s - e v i -
plera-66460#70351649_2
«  L‘utilisation du Tenofovir pendant la grossesse chez une
femme vih+ entraine une perte de masse osseuse chez le
nouveau né #CROI2014 » 05/03/2014
https://twitter.com/jdflaysakier/statuses/441246411976630272
« Après avoir parcouru de nombreux forums et témoignages
sur la toile cela fait plus de 6 mois que je suis passé à 4 jours
sur 7 (en accord avec mon médecin). Je suis sous ATRIPLA
et aucune baisse de T4 ni augmentation de la CV depuis.
Cela fait plus d’une boite de cachetons en moins par trimes-
tre !!! » 01/03/2014
http://www.seronet.info/sondage/au-cours-des-12-derniers-mois-jai-
deja-pratique-lallegement-de-mon-traitement-arv-65652#68342151_1
ISENTRESS
« Seulement maintenant, après 3 ans de Truvada-Isentress, non seulement je ne dors toujours pas,
ou le sommeil n’est pas réparateur, mais les lypodistrophies sont devenues insupportables, j’enfle de
l’abdomen et des seins, une horreur, tout ce que je mettais avant me boudinne:-( » 02/03/2014
http://www.seronet.info/sondage/au-cours-des-12-derniers-mois-jai-deja-pratique-lallegement-de-mon-traitement-
arv-65652#68418952_1
« Isentress + Kivexa m’a t’il dit. Argument essentiel : C’est THE traitement quand les autres ont causé des
effets secondaires un peu gênants au quotidien et au bureau.... Eh bien, euh…Comment vous dire ?!!! 
Faut déjà VIVRE je serais tenté de dire LOL...depuis je n’ai plus la moindre énergie ! Pour écrire ces lignes,
je suis appuyé contre un mur pour ne pas m’écrouler, j’ai bu des litres de café pour ne pas m’endormir
debout quand je fais pipi...soit entre 45 sec et 1mn30... » 21/03/2014
http://www.seronet.info/billet_forum/effets-secondaires-65826#70049541_3
« DepuisplusieursannéesjesuissousVireadCelsentrietIsentress,jen’aiplusdemauvaisesrépartitions
des  graisses mais je suis maigre, surtout des jambes, je ressemble à un sloogy » 11/03/2014
http://www.seronet.info/billet_forum/mauvaise-repartition-des-graisses-dans-le-corps-65857#69189446_4
HOPER - HIV Original Pharmaceutical E-reputation Research
PREZISTA
« Avec Prezista , je rencontre des troubles du sommeil : réveil toutes les 2 heures avec angoisses et rêves
anormaux. Du coup, j’ai l’impression que mon sommeil n’est pas réparateur alors qu’avant je dormais
très bien. Pouvez-vous m’indiquer si vous avez eu cet effet secondaire en prenant ce médicament et au
bout de combien de temps cela a passé? » 23/03/2014
http://www.seronet.info/billet_forum/prezista-effets-secondaires-66503#70221344_5
« Pour ma part, j‘étais justement sous Norvir Truvada et Prezista depuis qqes années...et j’ai moi aus-
si le bidon+visage/bras/jambes emacies...je viens de passer aujourd’hui sous evilprepamachintruc « 
22/03/2014
http://www.seronet.info/billet_forum/syndrome-du-gros-ventre-63454#70093809_6
« J’aiévoqué,ilyaenvironquinzejours,lorsdemonentretienavecmonspécialistecegenredepertesde
mémoire et, selon lui, ça n’a rien à avoir avec le VIH ni avec le traitement, mais, plutôt avec un déborde-
ment d’idées, de pensées,…. ; Bref, un esprit trop vif ! » 21/03/2014
http://www.seronet.info/billet_forum/effets-secondaires-65826#70049541_4
2022
HOPER - HIV Original Pharmaceutical E-reputation Research
5. DIGITAL INITIATIVES IN FRANCE
& USA
A-Comparisonofdigitalinitiativesbetween
FranceandUSAforthreelaboratories
• Janssen uses a wider range of channels than its competitors and
innovates with photo sharing on Tumblr (USA) or a serious game
(France). Janssen is also the only lab of the three to post video
content on Youtube and to engage in conversation on Facebook.
• Due to weaker regulatory constraints, satellite websites are more
numerousintheUSA,wherethe3HIVdrugsstudiedeachhaveadedi-
cated website.
• With the exception of BMS in France, each laboratory proposes at
least one free smartphone application related to HIV in each of the 2
countries.
• No official Twitter account focused on HIV was identified for any of these 3 laboratories.
23
Janssenmore
digitallyactiveand
innovativethan
Merck and BMS
both in France and
in the USA
USA France
Satelite
websites
Apple Store
websites
Google
Play apps
Serious
games
Twitter Facebook Youtube Tumblr
2 1 00 0 0 0 0 1 00 0 0 11 10 0
Total
4
BMS
Satelite
websites
Apple Store
websites
Google
Play apps
Serious
games
Twitter Facebook Youtube Tumblr
2 0 10 0 0 0 0 0 2 10 0 11 0
Total
7
Merck
Satelite
websites
Apple Store
websites
Google
Play apps
Serious
games
Twitter Facebook Youtube Tumblr
3 1 10 0 0 0 0 0 0 01 1 11 1 1 1
Total
10
Janssen / J&J
USA
B - Branded websites and
unbranded digital initiatives
onlyJanssenisactiveinthesocialmediaspace
• Branded initiatives are limited to « classical » websites where multilingual content is sometimes
available (English and Spanish versions of Atripla and Prezista websites).
•Janssenisthemostactivelab,visiblewith3typesofinitiatives(website,socialmedia,mobileapps
but not serious games).
•Sharingvisualcontentisoneofthewayschosentointeractwithnetusers(Merck’s’IDesign’,Janssen’s
’Positively together’).
• The ’Positively together’ Tumblr platform of Janssen is a world premiere in pharma industry.
• Strong involvement of BMS towards HIV positive women (the « SHE » initiative is also active in France
– see next page).
HOPER - HIV Original Pharmaceutical E-reputation Research
24
Drug-specific digital service
(branded)
HIV-specific digital service
(unbranded)
I DESIGN
BMS
SHE
Janssen
VIROLOGY
PORTAL
Janssen
POSITIVELY
TOGETHER
MY
HEALTH
MATTERS
BMS
THE HIV
GUIDE
Janssen
HIV
Serious
games
Mobiles
applications
Social
media and
networks
Websites ISENTRESS
BMS
ATRIPLA
Janssen
PREZISTA
Janssen
Facebook
VIH-SIDA
Serious
games
Mobiles
applications
Social
media and
networks
Janssen
Youtube
VIH
services
Merck
Merck
Merck
Merck
MON
JOURNAL
POSITIF
Janssen
DIETETIQUE
et VIH
Janssen
VIHdeo
game
HOPER - HIV Original Pharmaceutical E-reputation Research
FRANCE
C- Unbranded websites and
digital initiatives
Janssenstandsoutwiththemostdiverseinitiatives
• Absence of drug-specific branded initiatives due to French regulatory constraints.
• Janssen is the most active laboratory, visible with 4 types of initiatives (websites, social media, mo-
bile apps, serious game) and launching initiatives in collaboration with associations (e.g. VIHdeo game
launched ahead of Sidaction 2014). Providing services to patients in addition to providing a medicine
seems key for the laboratory (e.g. providing nutritional advice).
• BMS and Merck are visible on fewer channels (respectively SHE website and ‘mon journal positif’
free app).
25
Drug-specific digital service
(branded)
HIV-specific digital service
(unbranded)
I DESIGN
BMS
SHE
Janssen
VIROLOGY
PORTAL
TOGETHER
networks
Websites ISENTRESS
BMS
ATRIPLA
Janssen
PREZISTA
Drug-specific digital service
(branded)
HIV-specific digital service
(unbranded)
BMS
SHE
Janssen
VIROLOGY
PORTAL
Janssen
Facebook
VIH-SIDA
Serious
games
Mobiles
applications
Social
media and
networks
Websites
Janssen
Youtube
VIH
services
MerckMerck
Merck
MON
JOURNAL
POSITIF
Janssen
DIETETIQUE
et VIH
Janssen
VIHdeo
game
Study Methodology
HOPER
HIV Original Pharmaceutical E-reputation Report was carried out after col-
lecting and analyzing discussions (19,000 documents) throughout the month of
March over 1,400 French web sources, including about 80 sources specialized
in virology and infectiology.
After an automatic download based on queries, the documents were sorted and
analyzedbyLexisNexisBusinessInformationSolutionsLifeSciencesanalysts.
The team have integrated over 10 years of work in France and Europe into the study,
combined with specialists expertise in web 2.0 and eHealth. The team has been
trained to pharmacovigilance methodology.
AboutLexisNexisBusiness
InformationSolutions
LexisNexis Business Information Solutions, is a subsidiary of the international
communication group Reed Elsevier and a specialist of online information for
professionals. Our customers are companies belonging to the CAC 40 and SBF 120
for which we regularly conduct e-reputation and market insight studies. Over the
years LexisNexis BIS specialized in pharmaceutical and healthcare, working
for the most important laboratories in France. Our added value: a kit of powerful,
analytical tools tailored to the web and social media, together with a team of multi-
lingual analysts, experts in ehealth.
Spelling mistakes have not been proofed from original authoring in social media (blogs, forums, ...)
26
Photos:istockphoto.com/DR-DesignbyAlexandredeSaint-Jouanalex@saintjouan.com/Acetone.fr
Further information :
+33 1 71 72 48 49
http://bis.lexisnexis.fr/contact_us.html

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HOPER Study - HIV Original Pharmaceutical E-reputation Research by LexisNexis Business Information Solutions | LexisNexis BIS

  • 1. HOPER study HIV Original Pharmaceutical E-reputation Research June 5th , 2014
  • 2. 2 Preface For our fourth edition, Doctors 2.0 & You will again provide a forum for a well-informed discussion amongst all stakeholders: patients, professionals, industry, public sector about the  use of Social Media, Mobile Applications, Serious Games, Connected Objects. This information is presented through real-life examples in prevention and disease conditions. To complement the program, each year, Doctors 2.0 & You chooses to- gether with LexisNexis Business Information Solutions, a theme to study, based on the strategic importance of the area in healthcare. The resulting report is a key element  of the partnership between Doctors 2.0 & You and LexisNexis Business  Information Solutions. After diabetes in 2013 with the ISMOR or Insulin Social Media Original Research, we have turned together to HIV, with  HOPER,  “HIV ORIGINAL PHARMACEUTICAL E-REPUTATION RESEARCH”.  HIV has been one of the most active areas in healthcare on the web, from the early days to now. We felt that participantswouldbenefitfromalookatthekindofharddatathatLexisNexisBusinessInformationSolutions can produce regarding the activity of HIV digitally, patient profiles, information about drugs…. TheresultsoftheHOPERreportareindeedrichanddemonstratethediversityandquantityof information available from user-generated sources. The importance of this should not be under-estimated. HOPER will provide many avenues for improved collaboration amongst healthcare stakeholders. We sincerely thank the team for their hard work in putting the study together and look forward to the conversations we will all engage in together.   Denise Silber, Founder Doctors 2.0 & You Basil Strategies
  • 3. Introduction Hoper is the first study on social media networking & HIV in 2014. The Hoper study col- lected and analyzed more than 19,000 web documents over more than 1,400 French web sources during March 2014, including about 80 sources specialized in virology and infectiology. Hoper outlines the French HIV digital ecosystem and provides insights about its stakeholders: • Highlights on the key online channels, stakeholders and topics visible over the period, • Focus on 3 major HIV e-patient profiles, • Visibility and e-pharmacovigilance trends for 3 leading HIV drugs, • Comparison of US and French digital/social/mobile initiatives of 3 pharmaceutical laboratories, in this therapeutic area. The outcomes of the study can help pharmaceutical laboratories to identify where in the French HIV digital ecosystem there are opportunities and room for improving visibility, reputation and digitalness of their brands and products and better reaching their target audiences through relevant online touchpoints. The Hoper report 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 insights into the public debate around HIV in the web and the social media. For responses on specific questions in this area, please contact us and we will be very pleased to help. 3
  • 4. HOPER HIV Original Pharmaceutical E-reputation Research June 5th , 2014 4
  • 5. 1. HIV IN DIGITAL LANDSCAPE A/ HIV: overall visibility on internet, trends and buzzes B/ Twitter, forums, websites, press… Where is the media coverage? C/ Focus on Twitter D/ Focus on forums 2. E-PATIENTS’ PROFILS AND DISCUSSIONS A/ Experienced patients providing advice B/Long-termpatientstrying adrug regimenreduction C/Unexperiencedpatients D/Mostdiscussedtopics 3. STAKEHOLDERS PRESENCE A/ Associations’ commitment B/ Personalities’ mobilization C/ Institutions’ roles and activities D/ Laboratories’ share of visibility 4. E-PHARMACOVIGILANCE: BENCHMARK OF 3 ANTIVIRAL DRUGS 5. DIGITAL INITIATIVES IN FRANCE & USA A/ Comparison of digital initiatives between France and USA for three laboratories B/ USA: Branded websites and unbranded digital initiatives C/ FRANCE: Unbrandred websites and digital initiatives 6 8 9 10 11 12 13 14 16 17 18 19 20 5 23 24 25
  • 6. HIV >98% 1 % O,5% 1. HIV IN DIGITAL LANDSCAPE A - HIV: overall visibility on internet, trends and buzzes Among 19,000 web documents collected in March 2014: 6 HOPER - HIV Original Pharmaceutical E-reputation Research >98%The therapeutic area (HIV, sero- positivity, AIDS, etc) is the most discussed topic with several hun- dredsofnewdocumentsperday,rep- resenting more than 98% of the vol- ume of documents over the month. 1%CROI 2014 - (Conference on Retroviruses and Opportunistic Infections) only rep- resents 1% of the volume of documents. The conference was mostly covered intheonlinepress,onblogs,forums and Twitter, at the beginning of March. 0,5%3 HIV drugs - Presista, Isentress and Atripla - and their active prin- ciples represent 0,5% of documents. Their visibility is limited to forums where patients share their experience with HIV drugs and specialized websites.
  • 7. 6 1 2 3 4 5 0 200 400 600 800 1,000 1,200 1st march 5march 10march 15march 20march 25march 30march 7 HOPER - HIV Original Pharmaceutical E-reputation Research 1.Oscars: MatthewMcConaughey andJared LetoreceivedAcademicAwardsfortheirperfor- mances in the film Dallas Buyers Club . Several tweets have also passed on Jared Leto’s speech anditssupport tothewholeHIVcommunity. 2. Second baby born with HIV cured. This re- mission is explained by starting HIV treatment just few hours after the child’s birth. 3. Tweets related to the evening launch of Sidaction 2014 with the intervention of Line Renaud and the participation of Jean-Luc Romero. 4. Tested in female monkeys, a new vaginal gel could protect women against HIV even if applied hoursaftersex. 5. Persistent buzz related to HIV transmission betweenwomen. 6.Tweets related to #Sidactioncampaign2014. BUZZ OVER TIME (March 2014)
  • 8. Facebook - 4 docs Blogs - 55 docs National Press - 161 docs Websites - 459 docs Forums - 1,108 docs Twitter - 17,236 docs 91% HOPER - HIV Original Pharmaceutical E-reputation Research Twitter and forums are the main online agoraswherepublicconversationsrelated to HIV take place (more than 91% of the 19,000 documents) ! TWITTER is much more represented than the other types of sources. However, a huge amount of off-topic” tweets (up to 80%) mention AIDS/HIV in a “humorous” or even disparaging way. Besides, AIDS associations are very active on Twitter and some pieces of news related to HIVhavealsobeenwidelyretweeted(forexample Oscars to Dallas Buyers Club’s actors, etc). • FORUMS play a key role in the French HIV digital landscape. A few forums specifically focused on HIV, such as Seronet Forum andSidawebForum,are“THE”onlineplaceswhereFrenchpatients share their experience and disease management tips. Lively conver- sations take place there on forums. Some of these patients have been active members for years. • WEBSITES include web portals dedicated to HIV (Seronet, Aides, etc), health- dedicated sources (covering current news on HIV therapies, HIV prevention, HIV epi- demiology, etc) and general information sources (either covering current news on HIV or quoting HIV in various contexts, for example health challenges in Africa). • The visibility of Aids/HIV in the NATIONAL PRESS is mostly a matter of occasional “scoops”: Oscars to Dallas Buyers Club’s actors, therapeutic innovations (anti-HIV gels), controversies (drug consumption rooms, etc). • A few BLOGS such as « Le blog des séropositifs en colère » or « Le blog de JL Romero » are rather active. B - Twitter, Forums, websites, press… Where is the media coverage?
  • 9. 9 HOPER - HIV Original Pharmaceutical E-reputation Research Ranking of these accounts by number of followers (04/29/14) Top 10 Twitter accounts according to number of tweets related to HIV over the month of March 2014 0 60 tweets50 tweets40 tweets30 tweets20 tweets10 tweets Elus contre le SIDA - 1,493 fol. Jean Luc Romero 21,927 followers SidaInfoService - 2,277 fol. COCQSIDA - 410 fol. Essai VRI - 110 fol. Directeur des soins - 3,204 fol. Association AIDES 99,141 followers Recherch0ns 6,645 followers Séropositif libéré - 15 fol. Elus contre le SIDA Jean-Luc Romero Association AIDES Recherch0ns SidaInfoService Mutuelle Info COCQSIDA ESSAIVRI Directeur des soins Séropositif libéré •Aidsactivistandelectedrepresentative@JeanLucRomeroandhisassociation @ElusContreSida with nearly 30 % of the tweets have been very active, sup- porting a petition asking for non-discriminatory funeral services. • Through the dedicated account @essai_VRI, the Vaccine Research Institute announced the recruitment of 100 volunteers to test a new HIV vaccine. •Associationaccounts(@assoAIDES,@SidaInfoService)tweeted/retweeted news related to HIV (surveys, CROI’s and research highlights, prevention and test initiatives, political actions, etc). •Otheraccountslike@recherch0ns,@mutuellesinfoand@DirecteurdesSoins mainly passed on information picked up in the press or on health-dedicated websites. C - Focus on Twitter
  • 10. Doctissimo Forum (416 messages)Others - (75 messages) Atoute - Forum - (20 messages) Forum gay - (26 messages) Boursorama - Forum - (34 messages) Au féminin - Forum - (39 messages) Forum Santé Médecine - (53 messages) Hépatite - Forum - (61 messages) Forum Jeuxvideocom - (66 messages) Sida Web - (101 messages) Seronet - Forum (170 messages) 10 HOPER - HIV Original Pharmaceutical E-reputation Research • Doctissimo is far the major French source of reference where nets users seek advice after a “risky behavior”. Testing/diagnosis and prevention are the most discussed topics. 40 % of the mes- sages come from this forum. Similar discussions occur on forums like Forum Santé Médecine, Forum Au Féminin (with a predominance of female net users) and Forum AToute. • HIV diagnosed patients rather express themselves on Seronet and Sida Web forums. The impact of the disease and/or the therapy on their daily life is the most discussed topic. •MostmessagesfromForumJeuxVidéoquoteHIV/aidsina“humorous”ordisparaging way. Top 10 forums according to number of messages related to HIV over the month of March 2014 Generalhealthforums,HIV/hepatitisforums,LGBTforums,youngster forumsandfeminineforumsarethemostrepresentedtypes,with strong specificities regarding HIV conversation content. D - Focus on forums
  • 11. 11 2. E-PATIENTS’ PROFILES AND DISCUSSIONS A - “EXPERIENCED PATIENT PROVIDING ONLINE ADVICE ABOUT HIV” Menorwomen,typically35ormoreyears-old,withalongexperience withHIV,withacontrolleddisease,givingadvicestoyoungerpeopleandothernet-usersregarding unsafesexpracticesandtheimportance togettested forHIV. • Aware of policies and practices established by hospitals or other healthcare professionals to manage eithernewpatientsorolderoneswhoneeda readjustment oftheirprescriptionmedicines. • In general, a cultivated person, belongs to higher social categories, with advanced medical knowledge. Fightsprejudicesassociatedtogenderidentity, ethnic originsorsexual orientation. • Able to put things into perspective and calm other net-users’ anxiety by providing factual data. Easily accessible, especially to newly diagnosed patients and appreciated by net-users for his/her patience and ability to explain complex data, and for a wider open-mindedness than healthcare professionals. • Participates every day in online discussion threads and provides recommendations to other net users, butremainshumbleandrespectfulofthehealthcareprofessionals. •Shareslinkstoonlinecontent,sometimescorporatelinks. « Un test de dépistage du VIH donne officiellement une sérologie définitive à partir de quarante- deux jours après la dernière prise de risque. » 04/03/2014 http://forum.doctissimo.fr/doctissimo/infections-sexuellement-transmissibles/test-vih-sujet_166267_1. htm#68726966_61 « 1) Une séroconversion tardive, c’est une séroconversion qui intervient après quatre semaines, tu es loin de ça. 2) Cela veut dire plein de choses. Les miens sont enflés quand je suis patraque, quand j’angoisse, quand j’ai de la fièvre, quand j’ai une infection, quand je ne sais pas... C’est à un médecin de répondre à cette question. 3) Il ne fait que dire ce que tout le monde devrait savoir et que tu sais aussi mais que tu es incapable de rationaliser. » 06/03/2014 http://forum.doctissimo.fr/doctissimo/infections-sexuellement-transmissibles/peur-extrem-sujet_165557_1. htm#68837590_11 HOPER - HIV Original Pharmaceutical E-reputation Research
  • 12. « N’importe quoi ! Sans paniquer, il est concerné par le fait qu’il a pris un risque. On ne se base pas sur la sérologie d’autrui pour en déduire sa propre sérologie. Tu fais quoi de la fenêtre sérologique ? De plus, ils ont tous les deux pris des risques. Ils doivent se faire dépister tous les deux. On fait les choses correctement ou on ne les fait pas car ça ne sert à rien. » 13/03/2014 http://forum.doctissimo.fr/doctissimo/sida/preservatif-casse-acte-sujet_165932_1.htm#69585414_58 «  Tous les jours sur ce topic, on trouve des gens qui somatisent. Tu es le gagnant du jour.  » 03/03/2014 http://forum.doctissimo.fr/doctissimo/sida/stress-somatisation-sujet_165906_1.htm#68741841_127 « Appelle Sida info service, qui te dira s’il y a des précédents de contaminations de ce type (je n’en ai jamais entendu parler). C’est un accident du travail.. Que t’a dit la personne qui t’a soigné ? » 02/03/2014 http://forum.doctissimo.fr/doctissimo/sida/risque-sujet_165904_1.htm#68741869_142 B - “LONG-TERM PATIENT TRYING A DRUG REGIMEN REDUCTION” Patient with an extensive experience in HIV drugs, interested in reducing his/her therapeutics in order to avoid adverse events or simply to detoxify his/her organism. •Frequentlydealswiththeresistanceofphysicians,relatives,friendsorotherpatientsforwhichreducing thetreatmentisnotagoodwaytomanagethedisease, especiallywhenit iswell controlled. •Hasgenerallygoodbloodtestresults,agoodimmunityandhasfrequentlyanundetectableviral load. • Decides to reduce his/her treatment because of positive testimonies from other patients posted on forums or blogs. Several of them mention the « ICCARRE method », which consists in reducing the dos- age after a strong initial treatment. • Sometimes, this method is first tried during travels, holidays or week-ends and a number of patients notice that this break does not change their blood test results, so they do not inform their physicians about it. When the patient reiterates this break or decides to lastingly reduce the treatment, then the physicianisinformed.Thismethodisappliedindifferentways:bytakingthedrugsonlyafewdaysaweek or by reducing the daily dosage. « Seulement maintenant, après 3 ans de Truvada-Isentress, non seulement je ne dors toujours pas, ou le sommeil n’est pas réparateur, mais les lypodystrophies sont devenues insupportables, j’enfledel’abdomenetdesseins,unehorreur,toutcequejemettaisavantmeboudine:-(Lebilan est nickel 1300 CD4, charge virale toujours indétectable et c’est le problème: ma toubib ne tient compte que de ça! Donc, pour ma consult de Mars, vu que j’ai tout essayé, je vais lui mettre le marché en main: soit on essaie un allègement type 3/7, soit j’arrête tout! Ca fait 10 ans que je gobe bien tout ce que l’on me donne, je suis super observante, mais je connais mon corps: au bout de 3 ans de la même combinaison, les résultats sont toujours ok, mais moi, plus du tout! » 02/03/2014 http://www.seronet.info/sondage/au-cours-des-12-derniers-mois-jai-deja-pratique-lallegement-de-mon-traitement- arv-65652#68342151_1 HOPER - HIV Original Pharmaceutical E-reputation Research 12
  • 13. « Après une année de TRI je suis passé, avec l’accord de mon médecin à 6jours/7. ET c’est génial! Mon toubib me dit que tout le monde est largement en surdosage... Bon on verra si on passe en 5/7 bientôt. Déjà un jour de moins ça soulage psychologiquement et le corps bien sûr! Je prends Eviplera. » 02/03/2014 http://www.seronet.info/sondage/au-cours-des-12-derniers-mois-jai-deja-pratique-lallegement-de-mon-traitement- arv-65652#68342151_1 « Soledad j’ai d’abord commencé de 7/7 à 5/7 de moi-même car je suis sous ATRIPLA depuis si longtempsavecdesrésultatsidentiquesdepuistantd’années(avecles3moléculesquilecomposent)! Quej’aipenséquejenecourraisaucundanger...Leslabosn’ontjamaisfaitladifférencepourla posologieentreunenfant(ouado),unefemmede40Kg(environ)etunhommede80Kgcommemoi!!! Jemesuisditqu’ilsavaientduunpeutforcersurlesdosages,histoiresd’avoirdesrésultatsimmédiatssansse préoccuper des effets secondaires! » 03/03/2014 http://www.seronet.info/sondage/au-cours-des-12-derniers-mois-jai-deja-pratique-lallegement-de-mon-traitement- arv-65652#68342151_1 « Vous oubliez souvent de nous dire si vous pratiquez un allègement de traitement avec ou sans assentimentet/oucontrôlemédical.Jevousrappellequenousnesommespasmédecinsetque pour ma part mes 2 dernières infectiologues sont contre un traitement a la demande. D’après ellesc’esttroprisqueetatermeçaaugmentelesrésistancesetçafaitrepartirlachargevirale.C’estparfois indiqué à certains patients qui ont 20 ans de tri derrière eux pour soulager un moment mais pas tout le temps leur corps mais AVEC accord et contrôle d’un médecin. » 04/03/2014 http://www.seronet.info/sondage/au-cours-des-12-derniers-mois-jai-deja-pratique-lallegement-de-mon-traitement- arv-65652#68342151_1 C - “UNEXPERIENCED PATIENT RECENTLY DIAGNOSED” Patient recently diagnosed, with a poor experience with HIV. Feeling lost, confused, facing a difficult situation, needing help regarding the disease, the treatment. • In the case of a primary infection, has to deal with several drugs simultaneously. • Often searches the Internet for information on drug treatments and the evolution of the disease. • Feels insecure and uncomfortable with the treating physician. • Generally afraid of various aspects: blood test results (especially CD4 value), viral load, adverse events associated with the drugs that will have to be taken. •Feelsdepressed,ashamedandguiltyinthefirstdaysafterdiagnosis,almosttothepointofwantingtodie. •Shockedandbarelyableto«understand» and«absorb»explanationsprovidedby healthcareprofessionals. • Needs time to accept the new condition and the useful advice provided by other patients. HOPER - HIV Original Pharmaceutical E-reputation Research 13
  • 14. « Mon médecin généraliste qui est aussi infectiologue m’a sorti que tant que je n’aurai pas fini la pré-infection, je resterai sur ce que j’ai. Génial on discute bien mdr.... Heu... Bon ok à la limite je comprends. Mais en juin quand ce sera terminé, je serais toujours à 3 prises et je n’en veux qu’une! Je suis comme tout le monde, ça me gonfle d’avaler des cachetons surtout que j’ai la dose mais moins importante qu’avant. » 01/03/2014 http://www.seronet.info/billet_forum/un-prise-par-jour-66145#68323689_3 « Pour ma part j’ai commencé un traitement avec une PCP, des T4 à 24 et une CV très élevée. Allergique au Bactrim, je suis à ce sirop bien connu, qui est lui une vrai contrainte, surtout en dé- placement ou en sortie au restau. Pour le reste, mes prises de cachet ne sont que peu de chose et pourtant ! Avec une MAC identifiée en mars, je suis sortie de l’hosto avec le matin 3 ARV (1 Truvada, 1 Isentress) et un traitement antibiotique anti MAC (10 cachets ou gélules) + 1 pour le diabète, 1 pour l’hypertension, 1 pour le fer. Le soir, 1 pour la MAC, 1 Isentress, 1 pour le Fer, 1 pour le diabète et 1 piqure d’anticoagulant pour une embolie. Sans oublier ce sirop matin et soir. Je me trouvais heureux de n’avoir rien le midi ! » 05/03/2014 http://www.seronet.info/billet_forum/un-prise-par-jour-66145#68323689_3 « Toujoursest-ilquemalgrétoutcequej’aipuliredepositifsurcettemaladie,jesuistrèsaffecté, car ce qu’on ne connait pas nous terrifie... Je pleure beaucoup, malgré le soutien que je peux recevoir de mes amies et de mon partenaire. Je m’en veux tellement de lui avoir imposé cette situation. Il a décidé d’affronter cette épreuve avec moi, je lui en serai éternellement reconnaissant. » 07/03/2014 http://www.seronet.info/billet_blog/juste-diagnostique « Je l ai vu hier et j’avoue être encore sonnée.. donc il m a donné plusieurs infos mais c’est encore confus.. » 05/03/2014 http://forum.doctissimo.fr/doctissimo/sida/doute-fiabilite-depistage-sujet_165872_1.htm#68855832_16 HOPER - HIV Original Pharmaceutical E-reputation Research 14
  • 15. Prevention Impact on daily life Screening test diagnosis Efficiency Immunity viral load Coinfection comorbidity Adverse events Drug interactions Switch Price 0 100 200 300 400 D - Most discussed topics about HIV The most discussed topics, by the number of documents: • PREVENTION is the most recurrent topic in HIV digital landscape with 30% of documents. - on websites and in the press, prevention was mainly evoked in the context of the upcoming Sidaction campaign (scheduled at the beginning of April) and along with several buzzes focused on means of prevention of HIV transmission (start of clinical trials on a vaginal ring that might protect from infec- tion, debate on drug consumption rooms, etc) - on forums the message is more straightforward i.e. “use a condom if you don’t know the serological profile of your partner” - Twitter users either pass on prevention initiatives or spread information on new prevention methods or advances on HIV-vaccine research. • IMPACT ON DAILY LIFE topic with 25% of documents mentions contamination by HIV in a sexual context. Difficulties to announce seropositivity to loved ones or to accept a HIV+ diagnosis are also often discussed on forums. • SCREENING/DIAGNOSIS is also a very visible topic with 13% of documents as epidemiologic data were published and tweeted: victims of aids on the rise in Japan, HIV contamination of drug users in Sen- egal, young women more contaminated than men in France, etc. • DRUG EFFICACY was strongly fueled by the media coverage of various news highlighting the efficacy of antiretroviral drugs in the context of the CROI 2014 conference: start of clinical trials on a vaginal ring containing tenofovir, case of HIV+ newborn “cured” by a tritherapy, results of the Partner Study. • IMMUNITY/VIRAL LOAD corresponds to news on development of an HIV-vaccine and the cover- age of the CROI 2014 conference; results from a US National Institute of Health study on gene-editing offering new hope in controlling the virus without drugs was also picked up by the French press and on Twitter. Prevention, impact of HIV on daily life, and screening/diagnosis of the disease are the 3 most discussed topics. 15 Manual coding (sample of 1,500 documents)
  • 16. 3. STAKEHOLDERS PRESENCE A - Associations’ commitment: Sidaction and AIDESarethemostmentionedandalsoveryactiveonline SIDACTION The 20th edition of SIDACTION, in April, wasalreadywidelycoveredon socialmediaandotheronlinemediainMarch.Itwasanopportunity forseveral media to communicate about prevention and past breakthough discoveries in the area of HIV. AIDES • Frequently communicates on the prevalence of HIV in France or other countries and on prevention / diagnosis actions taken throughout the country. Aides announced the launch of new clinical trials and the publication of major results. • Recently Aides strengthened its partnership with the Archives Nationales in order to preserve the archives of the association. • Aides faces (like Act Up) a restructuring plan due to alackof funding. • Aides was also mentioned in articles on the condemnation of a HIV+ man accused of having inten- tionallyinfecteditswife. • Others cited with fewer documents: Médecins Du Monde, MédecinSansFrontière,Act-up,CRIPS,Tinder,SidaSOS, Coalition Plus, Inter-LGBT HOPER - HIV Original Pharmaceutical E-reputation Research Personalities 775 docs Associations 1,030 docs Institutions 424 docs Labs 82 docs 12 3 4 16 Associations, personalities and institutions are leading the discussions around HIV onthewebandsocialmedia. Thepharmalabsarefarbehind. Sidaction (298 documents) Aides (194 docs.) LGBT (87 docs.) Sida Info Service (84 docs.) Associations Afrique (76 docs.) Others (291 docs.) Jean-Luc Romero (185 documents) Others (161 docs.)
  • 17. 17 B- Personalities’ mobilization: JL Romero and his association of local politicians mobilized against AIDS and serodiscrimination JEAN-LUC ROMERO Jean-Luc Romero is a French politician who was among the first to reveal its seropositivity. He is also president and founder of the ELCS Association (« Elus Locaux Contre le Sida / Locally Elected politi- cians Against AIDS), president of CRIPS IDF and member of the National Council of AIDS. He is involved in prevention campaigns, especially in Paris, and more generally in the fight against homophobia and serophobia in daily life. ELCS ELCS association is fighting for equal access to freedom of movement regardless of HIV status, for non-discriminatory funeral services, for free condoms, for improving risk reduction measures and for allowing homosexual people to donate blood. J. LETO M.McCONAUGHEY Very high visibility for Jared Leto and Mattew McConaughey during the Oscars Event with the awards received for their performance in « Dallas Buyers Club » movie. MARISOL TOURAINE French Health Minister Marisol Touraine did not specifically communicate about HIV, but she was challenged on social media to take a clear position in favor of non-discriminatory funeral services. OTHERS Others cited in fewer documents: Anne Hidalgo, Laurent Fabius, LineRenaud,EltonJohn,Pierre Bergé, Jean-Louis Touraine, EmmanuelleCosse. HOPER - HIV Original Pharmaceutical E-reputation Research LGBT Sida Info Service (84 d Associations Afrique (76 docs.) Others (291 docs.) Jean-Luc Romero (185 documents) Jared Leto (145 docs.) Elus locaux contre le sida (109 docs.) Matthew McConaughey (108 docs.) Marisol Touraine (67 docs.) Others (161 docs.)
  • 18. C- Institutions’ roles and activities: national institutions more visible than international ones, IGAS and ANRS at the forefront IGAS The IGAS (General Inspectorate of Social Affairs) and the Aids National council both recom- mended to remove the discriminatory prohibition related to HIV positive status for funeral services. Their position was widely covered on Twitter. ANRS The ANRS (National Agency for Research on Aids) is mainly mentioned in the context of clinical trials (prime-boost vaccine trial, functional remission observed in ANRS-Optiprim trial involving recently diagnosed patients, early treatment in newborns, etc.). INSERM According to the INSERM, drug injection rooms could help reducing HIV transmission. The INSERM also launched a survey to understand how HIV can impact the daily life of women. OTHERS Others cited in fewer documents: Onusida, Centers for Disease Control and Prevention, Corevih, National Academy ofPharmacy,Unesco. Jean-Luc Romero (185 documents) Jared Leto (145 docs.) s locaux tre le sida (109 docs.) hey rs ocs.) Inspection Générale des Affaires Sociales (106 documents) Agence Nationale de Recherche sur le Sida (99 docs.) Inserm (55 docs.) Conseil national du sida (51 docs.) Others (112 docs.) HOPER - HIV Original Pharmaceutical E-reputation Research 18
  • 19. D- Labs’ share of visibility: GlaxoSmithKline, Gilead and Merck on the podium GSK • Promising preven- tive results published regarding monthly in- jection of long-lasting GSK744 in macaque monkeys;aclinicaltrialin humans will be launched soon. • LATTE Study: a combina- tion of GSK744 and rilpi- virine shows an efficiency similar to that of a standard tri- therapy for long-lasting viral sup- pression. GILEAD • In France, withdrawal of a batch of Viread due to potential rubber residues. • Market launch of Stribild, the first once-daily 4 drug combo treatment for HIV in a single tablet. MERCK • Clinical trial results evaluating experimental drug in HIV/HCV coinfected patients. •DevelopmentofMK-1439,aninvestigationalnucleoside,potentiallyinterestinginthecontextofresistance to other nucleosides as efficient as Sustiva and with a higher tolerance. HOPER - HIV Original Pharmaceutical E-reputation Research 19 GSK, Gilead and Merck are by far the three most visible phar- maceutical companies men- tioned in relation to HIV. Their visibility is essen- tially linked to preclini- cal or clinical trials (a consequence of communications around the CROI congress). GSK (18 documents) Gilead (17 documents) Merck (13 documents) BMS (9 documents) Janssen (6 documents) Roche (5 documents) Theradiag (5 documents) AbbVie (4 documents) ViiV (3 documents) Boehringer (2 documents) Number of documents published between 03/01/2014 and 03/31/2014, excluding Boursorama
  • 20. HOPER - HIV Original Pharmaceutical E-reputation Research 4. E-PHARMACOVIGILANCE: BENCHMARK OF 3 ANTIVIRAL DRUGS A-Potentialcasesofe-pharmacovigilance: Prezista*, Isentress* and Atripla* Prezista and Isentress are twice as visible online as Atripla. The 3 drugs display similar high proportions for potential online pharmacovigilance cases. For the three medicines, about 1/3 of messages correspond to potential e-pharmacovigilance cases (33% for Prezista, 29% for Isentress, 37% for Atripla) – a proportion much higher than in other therapeutic areas such as diabetes or level 1 analgesia where potential PV cases are typically in the range 5 to 10% of messages. Almost all these potential e-pharmacovigilance cases were identified on Seronet discussion forum. A total of 24 potential online PV cases for the three drugs 20 30docs PREZISTA 28docs ISENTRESS ! 42 % 25 % 33 ATRIPLA • Lower bone density of babies whose mothers took Tenofovir • Dizzyness • Psychological side-effects • Drug regimen reduction cases ISENTRESS • Excessive tiredness / exhaustion sleep disorders • Hyperthyroidy • Lipodystrophy • Thinness PREZISTA • Sleep disorders, anxiety, weird dreams • Difficulties concentrating • Lipodystrophy • Tiredness PHARMACOVIGILANCE MESSAGES 16docs ATRIPLA 30docs PREZISTA 28docs ISENTRESS ! 42 % 25 % 33 % ATRIPLA • Lower bone density of babies whose mothers took Tenofovir • Dizzyness • Psychological side-effects • Drug regimen reduction cases ISENTRESS • Excessive tiredness / exhaustion sleep disorders • Hyperthyroidy • Lipodystrophy • Thinness • Headaches PREZISTA • Sleep disorders, anxiety, weird dreams • Difficulties concentrating • Lipodystrophy • Tiredness PHARMACOVIGILANCE MESSAGES 16docs ATRIPLA *3differenttypesofdrugsselected:aproteaseinhibitor(Prezista),areversetranscriptaseinhibitor(Atripla)andanintegraseinhibitor(Isentress)
  • 21. 21 B-PotentialonlinePhamacovigilancecases: selection of patients comments ATRIPLA « Parce que Atripla chez un nombre non négligeable de pa- tients à provoqué des effets secondaires psy importants et parfois graves. » 24/03/2014 h t t p : / / w w w. s e r o n e t . i n f o / b i l l e t _ f o r u m / s t r i b i l d - v s - e v i - plera-66460#70351649_2 «  L‘utilisation du Tenofovir pendant la grossesse chez une femme vih+ entraine une perte de masse osseuse chez le nouveau né #CROI2014 » 05/03/2014 https://twitter.com/jdflaysakier/statuses/441246411976630272 « Après avoir parcouru de nombreux forums et témoignages sur la toile cela fait plus de 6 mois que je suis passé à 4 jours sur 7 (en accord avec mon médecin). Je suis sous ATRIPLA et aucune baisse de T4 ni augmentation de la CV depuis. Cela fait plus d’une boite de cachetons en moins par trimes- tre !!! » 01/03/2014 http://www.seronet.info/sondage/au-cours-des-12-derniers-mois-jai- deja-pratique-lallegement-de-mon-traitement-arv-65652#68342151_1 ISENTRESS « Seulement maintenant, après 3 ans de Truvada-Isentress, non seulement je ne dors toujours pas, ou le sommeil n’est pas réparateur, mais les lypodistrophies sont devenues insupportables, j’enfle de l’abdomen et des seins, une horreur, tout ce que je mettais avant me boudinne:-( » 02/03/2014 http://www.seronet.info/sondage/au-cours-des-12-derniers-mois-jai-deja-pratique-lallegement-de-mon-traitement- arv-65652#68418952_1 « Isentress + Kivexa m’a t’il dit. Argument essentiel : C’est THE traitement quand les autres ont causé des effets secondaires un peu gênants au quotidien et au bureau.... Eh bien, euh…Comment vous dire ?!!!  Faut déjà VIVRE je serais tenté de dire LOL...depuis je n’ai plus la moindre énergie ! Pour écrire ces lignes, je suis appuyé contre un mur pour ne pas m’écrouler, j’ai bu des litres de café pour ne pas m’endormir debout quand je fais pipi...soit entre 45 sec et 1mn30... » 21/03/2014 http://www.seronet.info/billet_forum/effets-secondaires-65826#70049541_3 « DepuisplusieursannéesjesuissousVireadCelsentrietIsentress,jen’aiplusdemauvaisesrépartitions des  graisses mais je suis maigre, surtout des jambes, je ressemble à un sloogy » 11/03/2014 http://www.seronet.info/billet_forum/mauvaise-repartition-des-graisses-dans-le-corps-65857#69189446_4 HOPER - HIV Original Pharmaceutical E-reputation Research
  • 22. PREZISTA « Avec Prezista , je rencontre des troubles du sommeil : réveil toutes les 2 heures avec angoisses et rêves anormaux. Du coup, j’ai l’impression que mon sommeil n’est pas réparateur alors qu’avant je dormais très bien. Pouvez-vous m’indiquer si vous avez eu cet effet secondaire en prenant ce médicament et au bout de combien de temps cela a passé? » 23/03/2014 http://www.seronet.info/billet_forum/prezista-effets-secondaires-66503#70221344_5 « Pour ma part, j‘étais justement sous Norvir Truvada et Prezista depuis qqes années...et j’ai moi aus- si le bidon+visage/bras/jambes emacies...je viens de passer aujourd’hui sous evilprepamachintruc «  22/03/2014 http://www.seronet.info/billet_forum/syndrome-du-gros-ventre-63454#70093809_6 « J’aiévoqué,ilyaenvironquinzejours,lorsdemonentretienavecmonspécialistecegenredepertesde mémoire et, selon lui, ça n’a rien à avoir avec le VIH ni avec le traitement, mais, plutôt avec un déborde- ment d’idées, de pensées,…. ; Bref, un esprit trop vif ! » 21/03/2014 http://www.seronet.info/billet_forum/effets-secondaires-65826#70049541_4 2022
  • 23. HOPER - HIV Original Pharmaceutical E-reputation Research 5. DIGITAL INITIATIVES IN FRANCE & USA A-Comparisonofdigitalinitiativesbetween FranceandUSAforthreelaboratories • Janssen uses a wider range of channels than its competitors and innovates with photo sharing on Tumblr (USA) or a serious game (France). Janssen is also the only lab of the three to post video content on Youtube and to engage in conversation on Facebook. • Due to weaker regulatory constraints, satellite websites are more numerousintheUSA,wherethe3HIVdrugsstudiedeachhaveadedi- cated website. • With the exception of BMS in France, each laboratory proposes at least one free smartphone application related to HIV in each of the 2 countries. • No official Twitter account focused on HIV was identified for any of these 3 laboratories. 23 Janssenmore digitallyactiveand innovativethan Merck and BMS both in France and in the USA USA France Satelite websites Apple Store websites Google Play apps Serious games Twitter Facebook Youtube Tumblr 2 1 00 0 0 0 0 1 00 0 0 11 10 0 Total 4 BMS Satelite websites Apple Store websites Google Play apps Serious games Twitter Facebook Youtube Tumblr 2 0 10 0 0 0 0 0 2 10 0 11 0 Total 7 Merck Satelite websites Apple Store websites Google Play apps Serious games Twitter Facebook Youtube Tumblr 3 1 10 0 0 0 0 0 0 01 1 11 1 1 1 Total 10 Janssen / J&J
  • 24. USA B - Branded websites and unbranded digital initiatives onlyJanssenisactiveinthesocialmediaspace • Branded initiatives are limited to « classical » websites where multilingual content is sometimes available (English and Spanish versions of Atripla and Prezista websites). •Janssenisthemostactivelab,visiblewith3typesofinitiatives(website,socialmedia,mobileapps but not serious games). •Sharingvisualcontentisoneofthewayschosentointeractwithnetusers(Merck’s’IDesign’,Janssen’s ’Positively together’). • The ’Positively together’ Tumblr platform of Janssen is a world premiere in pharma industry. • Strong involvement of BMS towards HIV positive women (the « SHE » initiative is also active in France – see next page). HOPER - HIV Original Pharmaceutical E-reputation Research 24 Drug-specific digital service (branded) HIV-specific digital service (unbranded) I DESIGN BMS SHE Janssen VIROLOGY PORTAL Janssen POSITIVELY TOGETHER MY HEALTH MATTERS BMS THE HIV GUIDE Janssen HIV Serious games Mobiles applications Social media and networks Websites ISENTRESS BMS ATRIPLA Janssen PREZISTA Janssen Facebook VIH-SIDA Serious games Mobiles applications Social media and networks Janssen Youtube VIH services Merck Merck Merck Merck MON JOURNAL POSITIF Janssen DIETETIQUE et VIH Janssen VIHdeo game
  • 25. HOPER - HIV Original Pharmaceutical E-reputation Research FRANCE C- Unbranded websites and digital initiatives Janssenstandsoutwiththemostdiverseinitiatives • Absence of drug-specific branded initiatives due to French regulatory constraints. • Janssen is the most active laboratory, visible with 4 types of initiatives (websites, social media, mo- bile apps, serious game) and launching initiatives in collaboration with associations (e.g. VIHdeo game launched ahead of Sidaction 2014). Providing services to patients in addition to providing a medicine seems key for the laboratory (e.g. providing nutritional advice). • BMS and Merck are visible on fewer channels (respectively SHE website and ‘mon journal positif’ free app). 25 Drug-specific digital service (branded) HIV-specific digital service (unbranded) I DESIGN BMS SHE Janssen VIROLOGY PORTAL TOGETHER networks Websites ISENTRESS BMS ATRIPLA Janssen PREZISTA Drug-specific digital service (branded) HIV-specific digital service (unbranded) BMS SHE Janssen VIROLOGY PORTAL Janssen Facebook VIH-SIDA Serious games Mobiles applications Social media and networks Websites Janssen Youtube VIH services MerckMerck Merck MON JOURNAL POSITIF Janssen DIETETIQUE et VIH Janssen VIHdeo game
  • 26. Study Methodology HOPER HIV Original Pharmaceutical E-reputation Report was carried out after col- lecting and analyzing discussions (19,000 documents) throughout the month of March over 1,400 French web sources, including about 80 sources specialized in virology and infectiology. After an automatic download based on queries, the documents were sorted and analyzedbyLexisNexisBusinessInformationSolutionsLifeSciencesanalysts. The team have integrated over 10 years of work in France and Europe into the study, combined with specialists expertise in web 2.0 and eHealth. The team has been trained to pharmacovigilance methodology. AboutLexisNexisBusiness InformationSolutions LexisNexis Business Information Solutions, is a subsidiary of the international communication group Reed Elsevier and a specialist of online information for professionals. Our customers are companies belonging to the CAC 40 and SBF 120 for which we regularly conduct e-reputation and market insight studies. Over the years LexisNexis BIS specialized in pharmaceutical and healthcare, working for the most important laboratories in France. Our added value: a kit of powerful, analytical tools tailored to the web and social media, together with a team of multi- lingual analysts, experts in ehealth. Spelling mistakes have not been proofed from original authoring in social media (blogs, forums, ...) 26 Photos:istockphoto.com/DR-DesignbyAlexandredeSaint-Jouanalex@saintjouan.com/Acetone.fr Further information : +33 1 71 72 48 49 http://bis.lexisnexis.fr/contact_us.html