PATIENT EMPOWERMENT & E-PATIENT
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Quels sont les effets secondaires de la « radiothérapie » ? #MoiPatient #SpecialCancer #Journeemondialecontrelecancer #WorldCancerDay #WeCanICan #Cancer #hcsmeufr

Quels sont les effets secondaires de la « radiothérapie » ? #MoiPatient #SpecialCancer #Journeemondialecontrelecancer #WorldCancerDay #WeCanICan #Cancer #hcsmeufr | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Des effets généralement limités à la zone ciblée   Lutter contre le cancer peut être un véritable parcours du combattant, et ce, pour de nombreuses raisons. Après l'instauration de votre traitement, vous pouvez souffrir d'effets secondaires à un degré plus ou moins important. Fatigue Après les premières séances de radiothérapie, vous risquez d'être fatigué pendant…
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Un #MoiPatient Spécial Cancer à l'occasion de la Journée Mondiale de lutte contre le Cancer avec le soutien institutionnel d'Accuray. Première rencontre avec un représentant d'une association de patients dans le domaine avec Natacha Espié, présidente d'EUROPA DONNA FRANCE.

#Journeemondialecontrelecancer #WorldCancerDay #WeCanICan #Cancer #hcsmeufr

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PATIENT EMPOWERMENT & E-PATIENT
Patients as the healthcare system "missing link" #digitalhealth #hcsmeu #hcsm #epatient
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PHARMA.....CONNAIS TU LES E-PATIENTS?

PHARMA.....CONNAIS TU LES E-PATIENTS? | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

Mi septembre, la nouvelle tombe. "le Mycophénolate Mofétil (Cellcept) est exclu du dispositif "tiers payant contre générique"".
Résultat du travail de "Renaloo", association de patients qui a su mobiliser son réseau et négocier avec l'ANSM et la CNAMTS...
C'est une première....mais ce genre de situation va probablement devenir de plus en plus courante.


A l'occasion de la WebTV que j'ai eu l'honneur d'animer sur BEPATIENT.fr : "Carte blanche" donnée aux "E Patientes" ( http://sco.lt/8VRpi5 ), j'ai pris le temps de compiler un certain nombre d'informations sur ce qu'on appelle les "E Patients" et ce mouvement connu désormais dans la santé comme le "Patient Empowerment".


On sait que la santé est un sujet très présent sur le web.


Avec plus de 30% de la population mondiale connectée (plus de 71% dans les pays développés), le web 2.0 compte maintenant plus de 100 000 000 de sites et plus d'un milliard d'utilisateurs .


La santé 2.0 en chiffres c'est plus parlant. Cela représente :


- 1/3 des recherches faites sur Google
- 20% des discussion dans les réseaux sociaux


Ce qui fait de la santé le second sujet le plus recherché/discuté sur le net.


E PATIENT : UN PHENOMENE AMERICAIN?


On peut penser que ce mouvement des E Patients est un phénomène anglo-saxon pour ne pas dire américain.


Le plus connu d'entre eux, E Patient DAVE (Dave de Bronkart), sexagénaire américain, est devenu le "fer de lance" de ce mouvement.
Diagnostiqué avec un cancer du rein en 2006, les médecins le laissent sans espoir de traitement. Alors Dave s'adresse au web, échange avec d'autres patients et apprend qu'il y a un traitement envisageable mais proposé uniquement par certains médecins.
Rentré en rémission, il décide de s'appuyer sur son expérience pour promouvoir une approche nouvelle de la santé. (une interview intéressante de E Patient Dave http://www.myfoxmaine.com/story/19595242/e-patient-dave-health-activist)


Le Patient EMPOWERMENT est né avec les différente définitions que l'on peut donner aux E Patients (bien résumé et étayé sur wikipedia http://bit.ly/GShDVf ).


Parmi d'autres celle qui fait l'unanimité est la définition élaborée par Tom Ferguson qui identifie les e-patients comme des individus équipés, capables, responsables et impliqués (equipped, enabled, empowered, engaged) dans leur état de santé et dans les décisions qui lui afférent.


L'étude américaine de PEW INTERNET (Social life of health information ( http://bit.ly/SxW4PK ) résume bien l'ampleur de ce phénomène aux Etats Unis.


  • 80% des internautes ont cherché des informations santé sur le web
  • 1/3 s'en sert pour évaluer et choisir leur médecin
  • 60% reconnaissent que cela a affecté leur décision sur comment traiter leur pathologie
  • 50% demandent alors un second avis médical après ces recherches
  • 30% s'en servent pour décider d'aller consulter ou pas
  • 30% l'utilisent pour comparer les options de prescription de traitement


Aux Etats Unis ou les professionnels de santé sont équipés à 80% de smartphones et à 60% d'IPAD, 40% d'entre eux reconnaissent aller consulter de l'information on-line PENDANT la consultation et 50% recommandent à leurs patients des sites à consulter (Manhattan Research)


Le mouvement est encore plus évident à la lecture de l'étude conduite par l'université californienne DAVIS (UC DAVIS Mai 2012 http://bit.ly/SxW4PS ) "The prepared patient" qui met en avant les attentes des E Patients :


  • se tenir informé
  • jouer un rôle actif dans ses soins
  • franchir une étape difficile sur une question de santé


Cela pour autant qu'il soit question de défiance vis à vis des professionnels de santé
Par ailleurs, les patients reconnaissent qu'internet n'est pas la seule source d'information ; les amis, les émissions de télé, les ouvrages/revues/magazines.. sont aussi cités. D'ou l'importance de garder une présence sur les médias "off-line".


Dans cette étude, enfin, il est précisé que :


  • 70% des patients discutent avec leurs médecins de l'information collectée.
  • 40% l'impriment afin d'en parler avec leur médecin
  • 50% déclarent suite à cette recherche avoir au moins une question à poser à leur médecin.


ET EN EUROPE ?


En Europe, les études et la prise de conscience se développent.


Dans son étude "Citizen Health Europe", Manhattan Research dresse en 2010 un état des lieux précis de la situation.


Premier constat, il y aurait 76 millions de E Patients en Europe !!


Parmi les motivations qui induisent à s'adresser au web les 3000 patients interrogés dans les 5 plus gros pays européens, on retrouve :


  • discuter/rechercher les informations obtenues lors de la consultation
  • utiliser internet pour rechercher des symptômes/diagnostic (le fameux phénomène "Dr Google")
  • challenger le diagnostic
  • demander un changement de traitement


L'étude conduite en 2010 par IMR international "Europe Social Media in healthcare" quant à elle précise les motivations des internautes pour discuter de la santé sur les réseaux sociaux.


  • 32% veulent trouver une expérience sur le traitement qu'ils prennent
  • 31% pour trouver de l'expérience sur la maladie qu'ils ont
  • 16% pour partager de l'expérience/maladie
  • 13% pour partager de l'expérience/traitement


EN FRANCE ?


C'est ainsi qu'en France l'étude IPSOS "Public affair 2010" nous révèle que que la santé est la 7ème raison de consulter le web (en France).


Et lorsque l'on regarde les sites consultés/moyens utilisés (Etude GFK 2010 http://bit.ly/PxRc0c ) :


  • 81% passent par les moteurs de recherche
  • 68% par des sites spécialisés type "Doctissimo" ou "AZ Santé"
  • 40% vont sur les forums de discussion
  • 38% sur les encyclopédies libres (Wikipédia, ..)


Par contre :


  • seuls 12% vont sur les sites de labo
  • 11% sur des blogs médecins
  • 10% sur des blogs de patients
  • 10% sur les sites d'associations de patients
  • 8% sur les réseaux sociaux


Quant on sait qu'un site comme Doctissimo génère environ 8 à 10 millions de visiteurs uniques par mois, le Ministère de la santé a décidé face à ce phénomène de conduire une étude avec des sociologues en 2010.


La conclusion est sans appel sur le sujet :


Les auteurs précisent qu'il s'agit là de la "CONSTRUCTION D'UN SAVOIR PROFANE PRATIQUE, COMPLEMENTAIRE DU SAVOIR EXPERT DES MEDECINS".


Le phénomène est tel que le CNOM (Conseil National de l'Ordre des médecins) a réagit en conduisant cette enquête avec IPSOS ( http://bit.ly/PjIRtd ) qui nous donne les chiffres pour la France :


  • 71% des internautes français recherchent des informations santé sur le web
  • 7 internautes sur 10 qui font ces recherches ne font pas la différence entre sites certifiés ou non
  • 62% des français consulteraient le site/blog de leur médecins si celui-ci en avait un
  • 34% des internautes qui cherchent sur le net disent en parler avec leur médecin (le deux tiers des patients ne discutent pas avec leur médecins des informations repérées en ligne)


Cela a d'ailleurs conduit le CNOM a inciter sur son site les médecins à se pencher sur ce phénomène pour :


  • Développer le conseil du médecin dans la recherche d’information santé.
  • Faire d’Internet un outil au service de la relation médecins-patients
  • Créer un label ordinal pour les sites publiés par des médecins.


ET ALORS ?


And so what??
Comment prendre en compte cette évolution parmi les acteurs du système de santé?

Et oui.. pas facile quand notre culture et notre cadre réglementaire ne nous permettent pas d'avoir un échange directe avec les patients.
Pas facile de passer d'une cible de 200 000 médecins (grosso modo) à près de 45 millions d'individus (juste pour la France)
Pas facile de passer d'un mix promo ou la visite médicale est omniprésente (près de 60% du budget) et le digital quasi absent (moins de 1%)


C'est le "business model" en entier qu'il faut repenser et les organisations qui vont avec....


L'orientation client ne doit plus être une intention... mais devenir une réalité du quotidien...avec la difficulté, certes majeure, de définir ce CLIENT.


Prescripteurs? Dispensateurs? Payeur? Patient?...Lequel choisir? Y en a t il qu'un? ou plusieurs? quel poids donner à chacun?


J'entends souvent, et à juste titre, dire par les acteurs (laboratoires, grossistes, pharmaciens,..) que le Patient est "AU COEUR DE NOS DÉMARCHES"...


Pour les marketeurs (futurs "chef de clients"?? :-)), cela doit se traduire par une cartographie du parcours client...peut être effectivement tournée autour de ce parcours.

Prenons le pari qu'à chaque étape du parcours patient (prévention, symptôme diagnostique annonce,analyses, prescription, dispensation, observance, suivi...que sais je?? selon les pathologies) nous repensons nos démarches marketing en mettent au coeur le patient et la notion de service client et de valeur ajoutée...


Et pourquoi ne pas considérer désormais nos clients historiques ou les nouveaux acteurs comme des partenaires ayant eux aussi pour client le Patient?


Peut être faudrait il dans un premier temps accompagner ce changement dans la relation médecin/patient?


Pour conclure je reprendrais un post récent d'Alex Butler, PDG de "The social Moon", gourou du digital pharma et ancien de J&J, qui s'interrogeait sur la pertinence de continuer à utiliser le terme de E-Patient.
En effet, à partir du moment ou tous les patients ou presque, vont sur le net peut être faut il juste les appeler PATIENTS...au même titre qu'on ne précise plus le terme 'numérique" quant on parle d'appareil photo...


Ça y est Pharma... tu en sais un peu plus sur les E Patients.
J'espère que cela t'aura intéressé.



Pour finir, je citerais Len Starnes, autre gourou du digital pharma et ex Bayer...qui écrivait dans une présentation destinée à la pharma:

"Fish where the fishes are"
(Peches là ou sont les poissons)


A bon entendeur

Lionel REICHARDT
Le Pharmageek

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Anne Sophie Llanas's curator insight, March 2, 2016 6:40 PM
Qui sont les e patients ? 
Anthony's comment, March 18, 2016 10:07 AM
Merci pour cette analyse !
Anthony's comment, March 18, 2016 10:07 AM
Merci pour cette analyse !
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Richard Smith: The most devastating critique of medicine since Medical Nemesis by Ivan Illich in 1975

Richard Smith: The most devastating critique of medicine since Medical Nemesis by Ivan Illich in 1975 | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Seamus O’Mahony, a gastroenterologist from Cork, has written the most devastating critique of modern medicine since Ivan Illich in Medical Nemesis in 1975. O’Mahony cites Illich and argues that man
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MoiPatient : un millier de patients prennent la parole sur leurs priorités pour la recherche sur les maladies rénales et témoignent de leur volonté d’engagement - Renaloo

MoiPatient : un millier de patients prennent la parole sur leurs priorités pour la recherche sur les maladies rénales et témoignent de leur volonté d’engagement - Renaloo | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Renaloo, maladies rénales, insuffisance rénale, dialyse, hémodialyse, dialyse péritonéale, greffe de rein, transplantation rénale, don du vivant : association de patients, info, actu, témoignages, forum, conseils et dialogue face à la maladie

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EMPOWEREDPATIENTPODCAST.COM #esante #hcsmeufr #digitalhealth

EMPOWEREDPATIENTPODCAST.COM #esante #hcsmeufr #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

Welcome to the Empowered Patient Podcast with Karen Jagoda.  This show is a window into the latest innovations in digital health and the changing dynamic between doctors and patients.

Topics on the show include

  • the emergence of personalized medicine and breakthroughs in genomics
  • advances for aging in place
  • using big data from wearables and sensors
  • transparency in the medical marketplace
  • challenges for connected health entrepreneurs 

The audience includes researchers, medical professionals, patient advocates, entrepreneurs, patients, caregivers, solution providers, students, journalists, and investors.


Via Dennis T OConnor
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Podcast Archive.  Deep dive awaits!

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Recherche onco-pédiatrique : vers une diminution des échecs thérapeutiques ? #esante #hcsmeufr

Recherche onco-pédiatrique : vers une diminution des échecs thérapeutiques ? #esante #hcsmeufr | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
À l’occasion de la Journée Internationale du Cancer de l’Enfant le 15 février, l’Institut Curie, centre de référence international des cancers pédiatriques, souhaite intensifier la recherche et obtenir plus de financements pour progresser plus rapidement.
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Santé numérique : et si la vraie révolution était celle des patients ? –  #esante #hcsmeufr #digitalhealth

Santé numérique : et si la vraie révolution était celle des patients ? –  #esante #hcsmeufr #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Le numérique est-il utile en médecine et si oui, pour faire quoi ? Poser la question pourrait passer pour de l’idiotie tant le discours ambiant est que le numérique va tout révolutionner, y compris la santé. Pourtant, lorsque l’on se rend chez le médecin ou à l’hôpital, l’utilité du numérique ne saute pas aux yeux. Mon [...]
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La visibilité des maladies dans la sphère publique #hcsmeufr #esante #digitalhealth

La visibilité des maladies dans la sphère publique #hcsmeufr #esante #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Winnie Harlow et son vitiligo, Kangourou Girl et sa stomie, Theresa May et son diabète… Les exemples se multiplient : les malades font leur coming-out, s’assument sans tabou et partagent de la connaissance sur leur maladie.
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Sayali Phatak: Hack Your Health #hcsmeufr #esante #digitalhealth

Sayali Phatak: Hack Your Health #hcsmeufr #esante #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Self-experiment and improve your well-being

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Dennis T OConnor's curator insight, February 13, 1:02 AM

Action-Targeted Research Study:  Self-Experiment to see if an action you're contemplating is "WORTH IT"?

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E-santé et promotion de la santé : un mariage fécond ? #hcsmeufr #esante #digitalhealth

E-santé et promotion de la santé : un mariage fécond ? #hcsmeufr #esante #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Education Santé - Un mensuel au service des intervenants francophones en promotion de la santé

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Belong - Beating cancer together #esante #hcsmeufr #digitalhealth

Belong - Beating cancer together #esante #hcsmeufr #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
The Belong app provides people with cancer and their families a unique and innovative personalized solution to help manage and fight cancer more effectively.
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Helping Patients Navigate Cancer With The Power And Simplicity of Waze #esante #hcsmeufr #digitalhealth cc @giomarsi

Helping Patients Navigate Cancer With The Power And Simplicity of Waze #esante #hcsmeufr #digitalhealth cc @giomarsi | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Patients and caregivers now have a powerful tool to help navigate cancer care.
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HOMO CONNECTUS & DR DATA – CONFÉRENCE - 20 Février #esante #hcsmeufr #digitalhealth

HOMO CONNECTUS & DR DATA – CONFÉRENCE - 20 Février #esante #hcsmeufr #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
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HealthPopuli.com

HealthPopuli.com | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Most patient visits to doctors result in a prescription written for a medicine that people retrieve from a pharmacy, whether retail in the local community or via mail order for a maintenance drug. This one transaction generates a lot of data points, which individually have a lot of importance for the individual patient. Mashed with other patients’, prescription drug utilization data can combine with more data to be used for population health, cost-effectiveness, and other constructive research pursuits. At HIMSS19, there’s an entire day devoted to a Pharma Forum on Tuesday 12 February, focusing on pharma-provider-payor collaborations. Allocating a full day of HIMSS programming to this topic, talking beyond the claim or EHR, is a sign that the pharmacy and prescription drugs are recognized as a strategically important player in the health data ecosystem. Increasingly, prescriptions are digitally-initiated via ePrescribing platforms. But electronic prescribing alone doesn’t solve the Holy Grail challenge for both the pharmaceutical industry and providers: medication adherence. A new survey from OptimizeRx found that physicians are concerned about their patients not filling Rx’s — but that most do no follow up to determine whether patients actually do fill the prescriptions doctors wrote. That’s referred to as prescription abandonment on the part of the patient. The first bar chart, from IQVIA research, shows the direct relationship between out-of-pocket costs for patients and their abandonment of the prescription. Nor do most physicians track patients’ ongoing adherence and persistence to a prescription regimen, the OptimizeRx study revealed. When OptimizeRx asked the 642 doctors polled what factors they believed contributed to patients not filling an Rx, the top response, by far, was the cost of the drug. The Health Care Cost Institute’s January 2019 study found that some people with diabetes have made a decision to cut the amount of the drug they use or abandon it due to increasing costs for the life-sustaining therapy. The issue of drug cost transparency will also be featured at HIMSS19 during a panel on 13 February convening three people who play key roles on this issue: Dr. Steve Miller, Chief Clinical Officer, Cigna; Tom Skelton, CEO, Surescripts; and, Dr. Troyen Brennan, Chief Medical Officer, CVS Health. The vast majority of doctors polled by OptimizeRx say they have a role to play in discussing health care costs with patients. However, only 4 in 10 doctors told OptimizeRx that patients have raised the issue of prescription drug costs during their encounter. Here’s a link to OptimizeRx’s summary of the survey, which polled 642 doctors in the OptimizeMd network online in January 2019. Health Populi’s Hot Points:  I’ve been a paying member of HIMSS for over 25 years when the meeting was small enough to  be held in mid-sized cities like San Antonio and San Diego, and one could wear less-than-comfy shoes to cover the exhibition floor. Today, attending HIMSS requires resilience, smart nutrition, hydration, and indeed, the most comfortable pair of footwear you can find. (If you don’t believe me, check out Twitter #HIMSS19 hashtag this week to see both men and women showing off their footwear). While HIMSS is a membership and advocacy organization firmly focused on health care information technology, the scope of education, exhibitors and attendees has expanded to reflect growing learning in what constitutes health beyond healthcare services. The ADA poster featured here reminds us that “Insulin isn’t optional.” When people with diabetes feel forced to self-ration insulin, they are hurting themselves, their families, their employers. I propose that HIMSS is now part of a larger ecosystem serving public health interests now, as we come to appreciate the critical role of social determinants of health — a few of which are financial health, job security, and access to health care. That includes access to needed prescription drugs like insulin which treats one of the most significant public health epidemics in America. The OptimizeRx study reveals that physicians and patients want to engage in the critical conversation about prescription drug costs and access. I appreciate HIMSS bringing this issue to the fore this week, and welcome my own conversations with technology innovators to help address this public health issue.
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Fighting misinformation on social media using crowdsourced judgments of news source quality #esante #digitalhealth #hcsmeufr

Fighting misinformation on social media using crowdsourced judgments of news source quality #esante #digitalhealth #hcsmeufr | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Many people consume news via social media. It is therefore desirable to reduce social media users’ exposure to low-quality news content. One possible intervention is for social media ranking algorithms to show relatively less content from sources that users deem to be untrustworthy. But are laypeople’s judgments reliable indicators of quality, or are they corrupted by either partisan bias or lack of information? Perhaps surprisingly, we find that laypeople—on average—are quite good at distinguishing between lower- and higher-quality sources. These results indicate that incorporating the trust ratings of laypeople into social media ranking algorithms may prove an effective intervention against misinformation, fake news, and news content with heavy political bias.

Reducing the spread of misinformation, especially on social media, is a major challenge. We investigate one potential approach: having social media platform algorithms preferentially display content from news sources that users rate as trustworthy. To do so, we ask whether crowdsourced trust ratings can effectively differentiate more versus less reliable sources. We ran two preregistered experiments ( n = 1,010 from Mechanical Turk and n = 970 from Lucid) where individuals rated familiarity with, and trust in, 60 news sources from three categories: ( i ) mainstream media outlets, ( ii ) hyperpartisan websites, and ( iii ) websites that produce blatantly false content (“fake news”). Despite substantial partisan differences, we find that laypeople across the political spectrum rated mainstream sources as far more trustworthy than either hyperpartisan or fake news sources. Although this difference was larger for Democrats than Republicans—mostly due to distrust of mainstream sources by Republicans—every mainstream source (with one exception) was rated as more trustworthy than every hyperpartisan or fake news source across both studies when equally weighting ratings of Democrats and Republicans. Furthermore, politically balanced layperson ratings were strongly correlated ( r = 0.90) with ratings provided by professional fact-checkers. We also found that, particularly among liberals, individuals higher in cognitive reflection were better able to discern between low- and high-quality sources. Finally, we found that excluding ratings from participants who were not familiar with a given news source dramatically reduced the effectiveness of the crowd. Our findings indicate that having algorithms up-rank content from trusted media outlets may be a promising approach for fighting the spread of misinformation on social media.
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Les soignants se mettent dans la peau des malades au CHU de Bordeaux #esante #digitalhealth #hcsmeufr

Les soignants se mettent dans la peau des malades au CHU de Bordeaux #esante #digitalhealth #hcsmeufr | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Dans la peau d'un malade. C'est l'expérience qu'ont accepté de vivre à la mi-janvier 36 professionnels de santé au sein d
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4 campagnes qui luttent efficacement contre le cancer #esante #digitalhealth #hcsmeufr

4 campagnes qui luttent efficacement contre le cancer #esante #digitalhealth #hcsmeufr | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Pour la Journée mondiale contre le cancer, lundi 4 février, Stratégies a sélectionné quatre campagnes qui ont le mérite de faire réfléchir à la maladie et d'inciter au dépistage. 1. Un
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Charity creates online cancer support map #esante #digitalhealth #hcsmeufr

Charity creates online cancer support map #esante #digitalhealth #hcsmeufr | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
The charity Dimbleby Cancer Care has launched Cancercaremap.org to help those affected by cancer find support.
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JMIR-Evaluating the Quality of Health Information in a Changing Digital Ecosystem | Keselman #esante #digitalhealth #hcsmeufr cc @giomarsi

JMIR-Evaluating the Quality of Health Information in a Changing Digital Ecosystem | Keselman #esante #digitalhealth #hcsmeufr cc @giomarsi | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet
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"Le cancer est une maladie sociale, lorsque les traitements sont terminés, on porte les stigmates sociaux", selon la Ligue contre le cancer

"Le cancer est une maladie sociale, lorsque les traitements sont terminés, on porte les stigmates sociaux", selon la Ligue contre le cancer | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

Emmanuel Jammes, délégué à la mission société et politique de santé de la Ligue contre le cancer, le 4 février 2019 sur franceinfo.


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Millennials may be the last generation to know so little about their health friendly poke to walter and sam :-) #scanadu @sam_debrouwer #digitalhealth #ehealth #hcsm #hcsmeufr

Millennials may be the last generation to know so little about their health friendly poke to walter and sam :-) #scanadu @sam_debrouwer #digitalhealth #ehealth #hcsm #hcsmeufr | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

One of the problems of the Second Artificial Intelligence (AI) Winter (1987-1993) was that there was not enough data to go around. We did not yet understand the value of “Big Data,” and academia was working on models fueled by “Small Data.” However, now we have entered the era of “Bigger Data Than We Ever Imagined.” We are producing data on the order of exabytes. It is predicted that by 2020 we will use zettabytes. By 2024, yottabytes are in sight.

Hyperscalers are frantically expanding their clouds to meet the demands of the 21st century, and the whole planet will become one giant hard disk attached to, hopefully, a capable calculator. Exascalers, on the other hand, are concerned with “Fast Data”, the application of big data analytics to smaller data sets in near-real-time. They are racing beyond the petaflop to reach exaflop speed by 2021.

In 2009, there were no information technology companies in the FT Global 500 top 5. However, a mere nine years later, all companies in the FT Global were information technology companies, which took over from big energy. Most importantly, all of these companies are in the process of pivoting towards AI. One of them is Tencent, the first Chinese information technology company to enter the top 5 (admittedly, this only happened for Q1. The company later lost its position after its earnings call in Q2).

However, a new data inflection point is coming, and it will be driven and influenced by the pressing need in healthcare. 2018’s FT Global top 5 has undoubtedly posed two questions: Which industries provide the most data, and which ones need the most speed? They all arrived at the same conclusion: medical and life sciences.


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Cancer ..un point de l'OMS #esante #hcsmeufr #digitalhealth

Cancer ..un point de l'OMS #esante #hcsmeufr #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
WHO fact sheet on cancer providing key facts and information on figures, causes, risk factors, prevention, early diagnosis,
treatment, palliative care, WHO response.
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Rescooped by Lionel Reichardt / le Pharmageek from Social Media and Healthcare
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Patients’ online interventions can scupper clinical trials #esante #hcsmeufr #digitalhealth

Patients’ online interventions can scupper clinical trials #esante #hcsmeufr #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

ctions coordinated by patients on social media risk breaching impartial research protocols and unblinding clinical trials (see Nature 563, 312–315; 2018). Clarification is therefore needed on the trade-offs between ethics and knowledge gains in shifting testing standards. Otherwise, drug companies could be tempted to exploit this methodological gap to make candidate treatments look better in tests.

Take the PatientsLikeMe web-based personalized health network, which aims to help people to find new treatments, connect with others and take action to improve their outcomes (see https://www.patientslikeme.com). In an event involving people with motor neuron disease (amyotrophic lateral sclerosis, or ALS), we found that use of the network resulted in a potentially disruptive confluence of interests that could not be resolved safely with alternative test designs (N. Tempini and D. Teira Econ. Soc. http://doi.org/czrw; 2019). Patients who inadvertently unblind trials online could weaken testing standards and so open up the market to inferior drugs. And allowing unblinding initiatives to proliferate spontaneously could provide opportunities for the unscrupulous to manipulate or even sabotage experiments.


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"Switch to Hope" : une plateforme en ligne pour aider les malades du cancer et leurs proches #esante #hcsmeufr #digitalhealth

"Switch to Hope" : une plateforme en ligne pour aider les malades du cancer et leurs proches #esante #hcsmeufr #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

Douze organisations, soutenues par Bristol-Myers Squibb, ont lancé dimanche la plateforme en ligne "Switch to Hope". Celle-ci vise à soutenir et rendre espoir aux personnes touchées par le cancer par le biais de témoignages, rencontres avec des compagnons d'infortune et conseils utiles. 


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Rescooped by Lionel Reichardt / le Pharmageek from Social Media and Healthcare
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Where Do You Go for Health Information? #esante #hcsmeufr #digitalhealth

Where Do You Go for Health Information? #esante #hcsmeufr #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

What do you do if you start feeling ill, or if you start having unusual symptoms? Do you search your symptoms online? Do you ask for opinions on social media? Technology makes it easy to find health information these days, but the information you can find online isn’t always reliable. Talk to your doctor when you have questions about your health.

Online searches

80% of adults who use the internet in the U.S. search for health information online. This includes researching symptoms and learning about diseases and treatments, as well as general health advice and information.

It’s OK to look to the internet for health information. Learning more about an illness or disease can help you know what questions to ask your healthcare provider, and basic health information about healthy eating and exercise can help you make healthy life decisions. It’s important, however, not to fall victim to self diagnosis, that you learn to differentiate between credible and non-credible information, and that you realize online searches simply can’t replace the need for medical professionals.

You should still consult your primary care physician regardless of the quality of health information you find online.

Social media

It’s common for people to ask friends and family members for health advice. In the digital age, this often means taking to Facebook or similar social media platform. Social media allows us to reach large numbers of people in a short amount of time, but there’s no filter when it comes to the feedback that you receive.

In one survey, 90% of 18 to 24 year olds said they would trust medical information they saw in social media, but the health information shared on social media is not that reliable.

Like online searches, social media can be a good place to find general health information, but you shouldn’t look for a diagnosis of your symptoms.

Doctors

Whether you have a simple question about healthy lifestyle choices, or you have symptoms that need a diagnosis, your primary care physician is the most reliable source for health information.

Medical doctors have years of education, training, and experience, and they dedicate their lives to exploring and understanding health. Your doctor can help you make sense of the health information you find online, and help you make the right decisions that will lead to the best possible health outcomes.


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As medical misinformation infects the internet, doctors seek a cure

As medical misinformation infects the internet, doctors seek a cure | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

Online advice has proven dangerous and, in some cases, even deadly. And it poses serious questions for patients and professionals

Humans’ relationship with bacteria is complex. Sometimes they are helpful to our bodies, but other times they are dangerous. That relationship can also describe medical information on the internet and social media. There are trustworthy sources of information, but disreputable sources are proliferating, and experts say they could be endangering people’s lives.

A YouTube video promoting an herbal remedy for prostate cancer opens with a flashy infographic detailing the purported benefits of the treatment.

Set against a colorful depiction of a cancerous prostate, a voiceover describes the treatment: Natural herbal extracts are injected into the prostate, eliminating cancerous cells and returning the gland to normal.

The video, posted by a Chinese prostate clinic, has been viewed more than 340,000 times, placing it among the most-viewed prostate cancer-related videos on the social media website.

But it is highly misinformative, according to Dr. Stacy Loeb, a urologist at New York University Langone Health. The procedure is neither a guideline-recommended treatment, nor are its proclaimed effects supported by scientific evidence.

The video stands as a glowing example of the medical misinformation that permeates the internet and social media. To an untrained eye, such information can appear reputable, potentially sending an unwitting patient down a perilous path.

And it is spreading all over the internet.

Loeb found all sorts of misinformation when she examined the top 150 YouTube videos relating to prostate cancer screenings and treatment. Some videos overlooked significant drawbacks. Others included outdated information. Only a few provided references.

In all, 77 percent of those 150 videos contained misinformation or biased content either within the video or among the comments, where users at times offered or received medical advice from strangers. Collectively, those videos had been viewed more than 6 million times.

“Basically, the bottom line is if you go on YouTube and look up prostate cancer, you are very likely to land on something that is misinformative or biased,” said Loeb, whose findings were published last November in the European Urology journal.

It is next to impossible to quantify the amount of misinformation circulating across the internet. But it seemingly extends into every area of medicine. Loeb’s study likely represents a fragment of it.

Worse yet, that misinformation has proven dangerous and, in some cases, even deadly. And it provokes serious questions for both patients and medical professionals.

What steps can patients take to ensure the information they view online is sound medical advice? How can they distinguish between actual scientific data and misinformation – especially when they are presented so similarly? And what responsibility do clinicians and scientists have to combat all this misinformation?

THE DANGERS OF MISINFORMATION

Perhaps nothing illustrates the prevalence and dangers of medical misinformation better than the anti-vaccine movement. And few people have been more outspoken against it than Dr. Paul Offit, director of the Vaccine Education Center at the Children’s Hospital of Philadelphia.

Every year, Offit treats children who have contracted a preventable disease because their parents refused to vaccinate them. In the worst cases, those children die.

“Invariably, it’s because a parent made a decision not to give a particular vaccine based on bad information they found on the internet,” said Offit, who spent years developing a rotavirus vaccine. “I just found it unconscionable that that was happening.”

The percentage of unvaccinated American children continues to rise. According to the U.S. Centers for Disease Control and Prevention, 1.3 percent of children born in 2015 had not received any vaccinations by the time they turned age two. That figure has quadrupled since 2001, when it stood at just 0.3 percent.

Many parents who choose not to vaccinate their children believe those inoculations cause autism – despite at least 26 scientific studies rejecting any link.

It’s a movement primarily based off a disproven study retracted eight years ago after its lead author, Andrew Wakefield, was found guilty of committing unethical conduct. Wakefield lost his medical license in England.

But it continues despite clear and potentially severe consequences. Notable measles outbreaks hit the United States in 2014, 2015 and 2017 – less than two decades after the disease was considered eliminated within the country.

Still, the anti-vaccine movement persists, fueled in part by celebrities and all sorts of unreliable sources online.

“That’s where this war is being fought – on the internet,” Offit said. “That’s where most people get their information these days.”

To a certain extent, Offit empathizes with the plight of parents. The Information Age has given a sounding board to all sorts of people, no matter their qualifications. Not too long ago, network television stations and newspapers played the role of gatekeepers.

“The internet is unaccountable,” Offit said. “It’s unverifiable. Therefore, it’s full of great and awful information.”

For some, the misinformation acts as a mirage. Despite years of research, scientists have yet to identify all of the causes or find a cure for autism. So, Offit said he understands why some parents become so enticed by people, like Wakefield, who claim to have an answer even as everyone else comes up empty-handed.

“He still has a following even though 17 studies have proven that MMR does not cause autism,” Offit said, referencing the vaccine for measles, mumps and rubella. “He still has his followers who like his certainty in an area where there can’t be certainty.”

Rather than delve into the internet, Offit recommended patients identify a physician they can trust.

“In the end, you find a doctor that you think is trustworthy and you trust them,” Offit said. “It’s hard to educate yourself.”

‘WE’RE COMPELLED BY STORIES’

In his latest book, titled “Bad Advice,” Offit wrote that the problem isn’t that there’s so much conflicting information out there. Rather, it’s that there is so much misleading information. And without a medical background, it can be challenging to differentiate between the two.

If a parent wanted to thoroughly research the effects of the chicken pox vaccine, they would need to read several hundred medical papers, Offit said. And that would require them to have knowledge in all sorts of areas – virology, immunology, epidemiology and clinical medicine, among others.

The vast majority neither have the knowledge, nor the time, to do so.

That’s why both the the CDC and the American Academy of Pediatric have advisory boards filled with experts who can read those papers and make appropriate recommendations. As unpopular as it may be, Offit urged people to trust them.

“That is just not a message that sells in the 21st century – ‘Trust us, we’re the experts,'” Offit said.

Only 34 percent of Americans express great confidence in medical leaders, according to The New York Times. That’s down from more than 75 percent in 1966.

Patients often walk into Offit’s clinic claiming they have researched vaccines, he said. By that, they mean they have gone online and read a bunch of people’s opinions on the subject. They have not read the actual research papers.

“If you’re going to do that, at least get good opinions,” Offit said. “Don’t go to Natural News for this. Don’t go to web sites that are selling something. Go to websites like the Mayo Clinic, or the Children’s Hospital of Philadelphia, or Centers for Disease Control and Prevention, that are at least grounded in fact.”

Because people don’t have the background needed to sort good data from bad data, they instead to turn to believability, Offit wrote in “Bad Advice.” Thus, the correct information doesn’t always win out.

“I think we’re human, so we’re compelled by stories,” Offit said. “I think the people who tell the best story often are the ones who are able to rise above the noise. That’s what we need to do. We need to be able to tell a compelling story.”

MAKING SCIENCE ACCESSIBLE

Medical researchers and clinicians are accustomed to disseminating information through a lengthy, fully-vetted process.

Research studies are subjected to peer review prior to publication. Those same studies are nuanced, often with entire sections dedicated to their limitations. And their findings must be repeated again and again before being adopted as scientific truths.

The internet, of course, is a bit less rigorous.

It’s a world where the medical opinions of celebrities can carry as much sway as a doctor’s expert advice. Snake oil salesmen, once relegated to back alleys, have full reign. Anyone with a decent following can draw followers to misinformation, even while holding the best intentions.

With social media flooded by unsubstantiated messages, clinicians are recognizing the need to counteract medical misinformation online. To do so, they need to find ways to make science more accessible and understandable.

“We don’t want to dumb down science,” said Dr. Raina Merchant, director of Penn Medicine’s Center for Digital Health. “But we want to make it easier to understand what the take-home message was.

“… If we come up with scientific recommendations and it’s hard for people to understand them, it makes it a lot easier for misinterpretation, whether it’s intended to be nefarious or not.”

Merchant and her colleague, Dr. David Asch, penned a joint viewpoint in the Journal of the American Medical Association last November, arguing that researchers must be proactive in defending their objective findings against erroneous claims.

In some cases, they said, that may mean taking an adversarial stance to debunk myths. That strategy carries some risk, as doing so could further decrease trust in the scientific enterprise. But they found the alternatives worse.

“I do think that it makes sense to try it in a measured way that doesn’t give up the discipline and the measured qualities of science, to call out falsehoods and to undermine them,” said Asch, executive director of the Penn Medicine Center for Health Care Innovation.

At the very least, clinicians as a whole need to become more engaged online. There, they can observe the misinformation that their patients possibly are reading. And they can enter into the dialogue, sharing accurate information.

“We can go completely on the one side and say we should only direct people to these accepted, vetted sources that usually get it right,” Merchant said. “But part of what social media has enabled is the ability for people to share information with each other. Sometimes, this peer-to-peer support can be helpful.”

Merchant and Asch called for coordinated social media campaigns designed to engage patients on the platforms they use. Though numerous researchers already thoughtfully engage social media users, most cannot compete with bots that churn out dozens of posts each day, reaching millions of people.

Bots often are used to influence public opinion or sell products. For instance, one study found that bots might be driving much of Twitter users’ discussions on e-cigarettes – a product that can help adults quit smoking, but has hooked many teens on nicotine.

Merchant and Asch also stressed the need for researchers to adopt a more emotional and narrative-driven approach to disseminating information.

Researchers mostly have been taught to write in a dispassionate form, emphasizing facts and avoiding anecdotes. That’s a great way to generate objective evidence, Asch said. But it’s a poor way to convey it.

People respond to stories, Asch said. He pointed to the parables of the Bible and Greek myths like “The Odyssey.”

“We love our lessons in stories,” Asch said. “It’s interesting that we don’t take advantage of those skills when we’re trying to communicate facts.”

But they can be effective tools in combating misinformation.

“If there are good guys and bad guys, good guys and bad guys have the same tools,” Asch said. “It’s helping the good guys learn how to use the tools that, at the moment, have only been used by the bad guys.”

ENHANCING CREDIBILITY ONLINE

Count Dr. Austin Chiang among the physicians leading the charge online.

A gastroenterologist at Jefferson Health, Chiang recently became the health system’s chief medical social media officer. It’s a newly-created role that only a few medical institutions have established. And it’s one designed to increase social media engagement among Jefferson clinicians.

“Part of the reason why the anti-vaccine movement took off was because there weren’t enough qualified medical professionals involved in the conversation online,” Chiang said. “We’re burdened with all the existing responsibilities that we have and often there’s no emphasis for physicians, or other clinicians, to have a social media presence.

“That’s what I’m trying to demonstrate. We really need to be involved in those social media conversations.”

Last September, Chiang launched an Instagram campaign, #VerifyHealthCare, that urged medical practitioners to post a picture alongside their credentials – everything from their medical degrees to their certifications to their clinical research.

The campaign, which generated more than 1,600 Instagram posts and spread to Twitter, alerted viewers to their areas of expertise, adding credibility to the medical information they shared on social media. It also pushed viewers to verify the medical backgrounds of social media influencers before accepting any medical information they might share.

“We wanted people to double- and triple-check who they were trusting online,” Chiang said.

Within GI, Chiang said he has seen unsubstantiated claims regarding colon cleanses and detox teas, neither of which have been proven to remove toxins from the digestive system.

After all, not everyone posing online in a white coat is representing themselves accurately – even if they have a strong social media following. Sometimes, Chiang said, it is even hard for trained medical professionals to spot the difference.

Prior to his campaign, Chiang found chiropractors and osteopathic doctors who were not appropriately differentiating their credentials online. Sometimes, Allied Health professionals were not making it clear that they were not physicians. And medical students did not always disclose that they had not completed their training.

With so much medical misinformation already propagating online, Chiang found these misrepresentations counterproductive.

“Especially on Instagram, it’s a very visual platform,” Chiang said. “There’s a lot of people who are putting white coats on and stethoscopes. A lot of people have really good intentions sharing health knowledge on there.”

But if physicians are to take a more active role on social media, there needs to be some rules governing appropriate conduct. Chiang hopes to play a role in developing them.

“There needs to be more guidance and more standards for clinicians using social media,” Chiang said. “Not everyone is using it properly. There’s no consensus yet.”

Nevertheless, Chiang recognizes a need for more clinicians to hop on social media. Not only can they challenge misinformation, but they can direct people to accurate information and sources.

“For people who have expertise in those areas, we really should be involved in those conversations and not just sitting back,” Chiang said. “I think the focus has been all this misinformation, but there’s a lot of good out there.”

A ROLE FOR EVERYONE

The abundance of medical misinformation can prove particularly harmful to some of the most vulnerable patients, who often find themselves turning to the internet in the face of devastating news.

“When you’ve been diagnosed with cancer, this is one of – if not the most – difficult moments in your life,” said Julie DiBiase, vice president of original content at the Prostate Cancer Foundation. “People are searching. They’re really searching for good information. They’re searching for guidance.”

But they particularly want to hear optimistic information, DiBiase said. And that can make them particularly susceptible to misinformation.

“The solution to that, as a consumer, you have to be a detective,” DiBiase said. “You have to verify the source. Go to that website. Make sure that they can back it up.”

As a clinician, Loeb said she tries to point her patients to reliable information. She recognizes that many of her patients are going to seek out additional information after receiving their diagnoses.

So, she takes a few minutes to highlight the resources available at the Prostate Cancer Foundation. In some cases, Loeb signs people up to receive that information for them.

“It’s unrealistic to think that they will not have additional questions,” Loeb said. “Rather than allowing them to search for additional information on their own, we can be more proactive.”

When it comes to protecting people from medical misinformation, there’s a role for everyone.

Date: January 23, 2019

Source: phillyVoice


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Curated by Lionel Reichardt / le Pharmageek
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