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

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

Anne Sophie Llanas's curator insight, March 2, 6:40 PM
Qui sont les e patients ? 
Anthony's comment, March 18, 10:07 AM
Merci pour cette analyse !
Anthony's comment, March 18, 10:07 AM
Merci pour cette analyse !

e-Patients as journal authors: Sean Ahrens self-experiment published in a major journal | e-Patients.net

From e-patients.net

We'd love to start a list of other patient-authored papers and posters - let us know in the comments! We know of Dana M. Lewis & Scott Leibrand's poster about #OpenAPS in June - who else??
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ClinicoBru : Shared Resources Center for patient recruitment in clinical trials

From www.clinicobru.com

ClinicoBru is an integrated clinical site network including the the three academic hospitals of Brussels : Hôpital Erasme, Cliniques Universitaires Saint-Luc and Universitair Ziekenhuis Brussel
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Communication Crossroads: Managing Patient Interactions, Online Personas on Social Media

From www.the-hospitalist.org

It seems as though the negative stories always make the headlines: The humanitarian physician group sent to aid Haiti earthquake victims that posted not only patient photos on Facebook but also pictures of doctors drinking alcohol and brandishing soldiers’ firearms.1 Or there’s the story of the Redding, Calif.–based hospital accused of sharing a patient’s files with journalists and communicating via email about her treatment to hundreds of hospital workers.2

 

The pitfalls that can complicate the intersection of social media and patient privacy often come as no surprise when they arise, but digital communications, and social media sites in particular, also have made many positive contributions to the medical profession.

“Social media allows physicians to communicate with each other, to publicize items of interest, to solicit input from colleagues—even people that we don’t know—on a variety of topics,” says Brian Clay, MD, SFHM, interim chief medical informatics officer and associate program director of the internal medicine residency-training program at the University of California at San Diego.

But there is a dark side of social media, too, and some physicians have made significant missteps in social media use. Ryan Greysen, MD, MHS, FHM, assistant professor in the division of hospital medicine at theUniversity of California at San Francisco, has authored multiple studies on physician violations of online professionalism. In a report published in the March 2012 issue of JAMA, Dr. Greysen and co-authors note that 92% of the executive directors at state medical and osteopathic boards surveyed reported encountering at least one violation of online professionalism.3 Another report in the January 2013 issue of the Annals of Internal Medicine co-authored by Dr. Greysen notes that 71% of state medical boards have investigated physicians for violations of professionalism online.4 The consequences of these errors in judgment can be dire: Should your employer come across it or a colleague report it, you could lose your position and even lose your license.

Professional Guidelines

To avoid these significant and potentially career-ending blunders, the American College of Physicians(ACP)—in conjunction with the Federation of State Medical Boards (FSMB)—published recommendations offering ethical guidance in preserving the patient-physician relationship in context of social media.5 Similarly, the American Medical Association (AMA) published an opinion on professionalism in the use of social media.6 Their guidelines can be summarized in five succinct points.

  • Maintain standards of professional ethics in online communications, including respect for patient privacy.

Katherine Chretien, MD, associate professor of medicine at George Washington University in Washington, D.C., a clinical associate professor in medicine at the Uniformed Services University of the Health Sciences in Bethesda, Md., and chief of the hospitalist section at the Veterans Affairs Medical Center also in Washington, D.C., warns physicians to use the utmost caution to maintain patient anonymity when publishing case stories online. When publishing clinical vignettes, physician blogs, and other forms of online media, all details that can identify a patient must be completely removed, including all forms of the date (references to “yesterday” or “last week,” for example, can identify the date). Check anything you intend to publish against the HIPPA list of 18 identifiers.7 (See “HIPPA Identifiers” below)

“The safest way to proceed when publishing patient narratives online is to get consent,” Dr. Chretien says. “If consent is not possible, as in cases of incidents that occurred several years ago, change the personal details, such as location, and clearly disclose that you have. Or make the example very general.” For example, instead of discussing how frustrated you became with a patient with asthma who you saw at a particular hospital in a certain year (a clear violation of patient privacy), paint the illustration in broad strokes. Dr. Chretien suggests you might phrase your observations in this way: “One of the frustrations I find when treating asthma patients is …”

It would also be wise to seek advice from colleagues before posting patient information, she notes.

  • Do not blur the boundaries between your professional and social spheres.

In a 2011 study, Gabriel Bosslet, MD, assistant professor of clinical medicine and associate director of the fellowship in pulmonary and critical care medicine at Indiana University–Purdue University at Indianapolis, noted that 34% of participating physicians reported receiving a Facebook friend request from a patient or patient’s family member. As Dr. Chretien points out, this is less of a problem for hospitalists than private-practice physicians because the relationship with patients is transitory. The AMA, as well as the ACP and FSMB, note that physicians should not “friend” patients, accept friend requests, or contact patients through social media. Physicians are advised to keep their public and professional online personas separate, even to the point of creating distinct online identities for their personal and professional lives.

  • Maintain professionalism in your online persona, and continually monitor your online image to ensure it reflects positively on yourself and the medical profession.

Some physicians fall into the trap of placing questionable postings on their personal pages, including posting content that can be inappropriate for public consumption or venting about patients and employers. Stories or incidents that medical professionals find intriguing or exciting may be disturbing to those outside their community, and medical humor can be offensive.

“[Physicians] assume [their social media page] is their personal space, so they can post whatever they want,” adds Dr. Chretien. “Part of their error is that they believe they are addressing a small group of close friends, but they forget that postings go out to the larger, peripheral audience of all Facebook friends and can often be accessed by the general public.” An ill-considered anecdote can damage not only your own reputation but also the overall perception of the profession. Physicians are always viewed in their professional role, even in social interactions.

  • Use email and other forms of electronic communication only in cases of an established physician-patient relationship and only with informed patient consent. Documentation of these communications should be kept in the patient’s medical record.

Any request a physician receives for medical advice through a social media site or email must be handled with caution. The ACP and FSMB state that email and text communications with established patients can be beneficial but should occur only after both parties discuss privacy risks, the appropriate types of information that will be exchanged electronically, and how long patients should expect to wait for a physician response. Patient preference should guide the use of electronic communication with physicians, especially text messaging, says Dr. Greysen.

  • Be aware that any postings on the Internet, because of its significant and unprecedented reach, can have future career ramifications. Consequently, physicians are advised to frequently monitor their online presence to control their image.

Dr. Greysen points out that presenting a positive image of physicians in the media is not a new challenge. “Physicians have been publishing books about their experiences for decades. But posting online without oversight, or in the moment without reflection, can be devastating to a physician’s career because the reach of the Internet is exponentially vaster than that of any printed material,” Dr. Greysen says.

Deliver Better Healthcare through Social Media

Perhaps one of the most dramatic ways in which social media is positively impacting healthcare is the FOAM movement, or free open access medical education. Jeanne Farnan, MD, associate professor of medicine at the University of Chicago Department of Medicine and lead author of the ACP and FSMB social media position paper, points to the dynamic collection of resources and tools for ongoing medical education as well as the community that participates in openly sharing knowledge as examples. FOAM resources are predominantly social media based and include blogs, podcasts, tweets, online videos, graphics, web-based applications, text documents, and photographs, many of which are available by following the Twitter feed @FOAMed (see “FOAM Links” below). This FOAM community is dedicated to the belief that high-quality medical education resources and interactions should be free and accessible to all who care for patients and especially to those who educate future physicians.8

Social media also affords physicians the opportunity to be a force in public health policies. “There is an active group of physician and medical student social media users in the blogosphere and on Twitter who use their social media presence for activism, and this presence is intimately tied to how they see themselves as a medical professional,” Dr. Farnan says. “They blog and tweet about medical education issues and other public topics such as access to care and care disparity.”

Michelle Vangel, director of insight services with Cision, a Chicago-based public relations company specializing in social media communications, praises the power of social media for raising awareness of public health issues.

“In terms of public health, social media is valuable to better understand how health-related news resonates with the public,” Vangel says. “Two salient examples of major health crises reactions tracked on social media were the Ebola outbreak in Africa and the measles outbreak at Disneyland in California. At times, there was near hysteria over Ebola and vaccine debates, with misinformation spreading quickly. However, many hospitals and physicians tried to get ahead of the hysteria by providing concise, accurate information on different social media platforms, with Facebook often a popular channel to post information.”

Social media sites can also help by making emotional support available at disease-specific sites. These communities address the patient experience of the disease that goes beyond purely medical disease information. Vangel points to several online communities that “host pivotal conversations for patients,” she says. “There are Facebook community pages dedicated to a host of conditions, including diabetes, hypertension, and cystic fibrosis, where patients discuss the challenges of medication compliance, side effects, and even dissatisfaction with healthcare professionals. BabyCenter.com provides message boards about a wide array of topics for people trying to conceive, pregnant women with health conditions, and parents of babies with health issues. CancerForums.net and the health and wellness boards at DelphiForums.com provide support to specific disease populations.”

Vangel encourages physicians to monitor online patient-support sites to better understand the difficulties patients experience while under treatment. These sites can also help physicians recognize and address the gaps in patient understanding about various diseases and explore programs geared toward the populations suffering from a wide range of conditions. TH

AchhiKhabre's comment, August 27, 3:24 AM
Please visit us at www.achhikhabre.com

How Social Media Support Groups Enhance Patient Experience

From patientengagementhit.com

New research shows that the internet can support patient experience and patient satisfaction by offering social support groups and information gathering.
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Frequent Surfing on Social Health Networks is Associated With Increased Knowledge and Patient Health Activation

From www.jmir.org

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet
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Google Search s’occupera bientôt de nos symptômes - CRIP

From lecrip.org

Google Search s’occupera bientôt de nos symptômes Alors qu’Internet devient l’une des principales sources d’information médicale pour les patients, Google
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Mylan TV Spot for "FaceYourRisk.com": Doesn't Mention Risk of Not Being Able to Afford EpiPen!

From www.ispot.tv

When a girl begins to suffer a reaction to a food allergy, her friends frantically try to figure out what's happening. One girl asks the host of the party if there were peanuts in the brownies and sure enough, they were made with peanut butter. Mylan advises people with allergens to talk to their doctor about a prescription treatment for severe reactions, because every six minutes, someone with life-threatening food allergies is sent to the hospital.

Pharma Guy's curator insight, August 24, 1:25 PM

Mylan and its CEO, Heather Bresch, who described EpiPen as her "baby," are now facing the risk it took when it raised the price of EpiPen by 400%. For more on that, read “Mylan CEO Bresch, aka "Pharma Sis," Defends Price Gouging, Tax Evasion as Job Savers”; http://sco.lt/7uKmLB 

Cancers : l'application Fiches Info Patients

From www.roche.fr

Fiches Info Patients Votre application d'informations et conseils à propos des cancers L'application Fiches Info Patients a été développée pour vous aider à trouver facilement des informations et conseils,...
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Moins d'un internaute sur deux fait la différence entre résultat naturel et résultat sponsorisé - Blog du Modérateur

From www.blogdumoderateur.com

Plus les années passent et plus le caractère sponsorisé des publicités sur Google est discret. En 2007, elles étaient affichées sur fond jaune avec la ment
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How to Empower Patients with Your Website

From www.slideshare.net

People are booking flights, reservations, and hotels online, and patients are coming to expect the same type of services from their physicians. Your website pl…
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Future NHS: What if people controlled their own health data?

From www.gponline.com

It’s 2021. There has been a steady trickle of stories about what happens to people’s health data. There’s no concrete evidence of harm in any of these stories, but a crisis of confidence has built up over time. One hospital has been the subject of a cyberattack, but it is not yet clear whether sensitive data has been stolen and deciphered.Controversy about the use of health data is nothing new. Five years earlier in 2016, 2.2% of patients had exercised their right to opt out of data being shared beyond the NHS information centre after a botched attempt to link up information from patients’ GP records and hospital activity records.
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How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News

From www.powerfulpatients.org

How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News Ben Goldacre writing in Bad Science classified science reporting as falling into
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Des malades qui forment des patients et des médecins

From www.francetvinfo.fr

À Paris, Marseille et Grenoble, trois facultés de science ont décidé de former et de diplômer des personnes atteintes d'une maladie chronique. En effet, qui mieux que ces malades peuvent connaître de l'intérieur la souffrance que cela représente.
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Les débuts sans éclat de l’action de groupe en santé

From www.lesechos.fr

Les plaintes collectives sont désormais autorisées pour les produits de santé.Mais personne n’a franchi le pa
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Pharma Marketing Blog: Do Desperate Consumers Believe Cancer Drug DTC Ads?

From pharmamkting.blogspot.com

In a recent NYT OpEd piece, Matt Jablow, whose wife died of lung cancer, called the TV ads for BMS's cancer drug Opdivo "utterly misleading and exploitive" and said that if BMS really wishes to thank patients like his wife who participated in the Opdivo drug trials, it should pull the ads.

The Opdivo ad had already been criticized during an investor conference call by a Deutsche Bank analyst who questioned the value of direct-to-consumer (DTC) ads to promote Opdivo. Of course, the analyst was more concerned about BMS wasting money on ads that would have no effect on the sales of the drug, which are likely to grow "whether or not the company promoted the drug to patients."

The FDA has proposed to re-study the effect of superimposed text, or text placed over an image, on viewers' understanding of a DTC ad like that for Opdivo, which super-impose the words "A Chance to Live Longer"on buildings in big, bold text.

Meanwhile, some drug industry advertising experts have criticized Jablow's OpEd piece itself as being "disingenuous."

 

Find out who here.

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La nouvelle stratégie de la puissance publique pour favoriser l'émergence du e-patient

From www.telemedaction.org

La Ministre de la santé française , Marisol Touraine, a présenté le 4 juillet, dans les locaux de la start-up parisienne BePATIENT, la stratégie nationale e-santé à l'horizon 2020. Le choix du lieu n'est pas un hasard. la Ministre veut promouvoir la démocratie sanitaire numérique en favorisant l'émergence du e-patient.
GENS DE MAISON's curator insight, August 8, 7:27 AM
Il fallait que la puissance publique soit présente dans cette émulation à la fois pour favoriser l'émergence des innovations qui se bousculent aux portes de nos ordinateurs et autres objets connectés et aussi pour que se construise le garde fou nécessaire pouvant éviter le pire s'agissant du big data. GENS DE MAISON souhaite que ses applicatifs qui se veulent du numérique bienveillant soient reconnus dans cet environnement

The World's Best Medication Reminder May Be All Around You

From www.fastcodesign.com

We don't need more notifications in our lives, we just need them at the right time and in the right place.
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Patient Centricity #FAIL: Do Patient Surveys Induce Physicians to Prescribe More Opioids?

From www.nytimes.com

The questionnaire arrives in the mail a few days after a patient’s discharge from the hospital.

Did doctors treat you respectfully? Was your bathroom kept clean?

Most of the queries seem mundane, but a backlash has been growing against one: Did staff members do everything they could for your pain?

As the country struggles to control the epidemic of overdoses and deaths from prescription opioids, many medical professionals and policy makers are challenging the wisdom of asking patients to rate how hospital employees manage pain. Doing so, they argue, creates a dangerous incentive for doctors to prescribe powerful and potentially addictive painkillers.

Dr. Jerome M. Adams, the Indiana health commissioner, said that in conversations around the state, doctors frequently told him, “I’m scared to not give out those opioids because my patient satisfaction scores will come back poorly.”

Under the Affordable Care Act, patient ratings grew even more important: In 2013, scores on an inpatient survey required by the federal government became tied to hospitals’ Medicare reimbursement. But after waves of angry petitions and proposed bills to cut the pain questions, the Obama administration said last month that it would remove them, at least temporarily, from the reimbursement formula.

Doctors and other providers say part of the problem is that because pain is highly individualized and difficult to measure objectively, a survey question is a poor instrument for judging medical competence. Moreover, many experts add, patients have unrealistic expectations: They equate good treatment with the complete eradication of pain and assume they will be handed a prescription for fast relief.

In a culture increasingly influenced by consumer ratings, many doctors say such questions pressure them to substitute what a patient wants for their judgment about what the patient needs.

“Part of my paycheck comes from satisfaction scores,” said Dr. Thomas E. Benzoni, an emergency medicine physician at three hospitals in Des Moines. “So if doctors are being measured on whether the patient wants pain relief,” he added, that is what they may be inclined to provide.

Many experts, including physicians and patient advocates, agree that patients’ views should carry weight. But if surveys are to address pain management, other questions might be more useful in reinforcing good medical practice, they say.

Dr. Adams, Indiana’s health commissioner and an anesthesiologist, said questions about pain should ask whether staff members discussed the risks linked to painkillers such as opioids. Such exchanges, he said, could help temper a patient’s assumption that pain can be eliminated.

His suggestion: “Did staff set reasonable expectations for what your pain should be?”

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Trends in Seniors’ Use of Digital Health Technology in the United States, 2011-2014 (JAMA)

From jama.jamanetwork.com

The sickest, most expensive, and fastest growing segment of the US population are seniors 65 years and older. Digital health technology has been advocated as a solution to improve health care quality, cost, and safety. However, little is known about digital health use among seniors.
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Pourquoi l’empowerment permis par la e-santé va bouleverser le paradigme du système de santé ?

From www.journaldunet.com

Le système de santé français connaît des crises structurelles récurrentes. Alors que l’inertie des politiques publiques risque d’en accentuer sa déliquescence, la e-santé apparaît comme une solution particulièrement adéquate.
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Breast cancer patients who use social media express more satisfaction about treatment decisions

From www.news-medical.net

Women who engaged on social media after a breast cancer diagnosis expressed more deliberation about their treatment decision and more satisfaction with the path they chose, a new study from the University of Michigan Comprehensive Cancer Center finds.

But the researchers found significant barriers to social media for some women, particularly older women, those with less education and minorities.

"Our findings highlight an unmet need in patients for decisional support when they are going through breast cancer treatment," says lead study author Lauren P. Wallner, Ph.D., MPH, assistant professor of general medicine at the University of Michigan Medical School.

"But at this point, leveraging social media and online communication in clinical practice is not going to reach all patients. There are barriers that need to be considered," she adds.

Researchers surveyed 2,460 women newly diagnosed with breast cancer about their use of email, texting, social media and web-based support groups following their diagnosis. Women were identified through the Surveillance, Epidemiology and End Results database. The study appears in JAMA Oncology.

Overall, 41 percent of women reported some or frequent use of online communication. Texting and email were most common, with 35 percent of women using it. Twelve percent of women reported using Facebook, Twitter or other social media sites, and 12 percent used web-based support groups.

"Women reported separate reasons for using each of these modalities. Email and texting were primarily to let people know they had been diagnosed. They tended to use social media sites and web-based support groups to interact about treatment options and physician recommendations," Wallner says.

 

"Women also reported using all of these outlets to deal with the negative emotions and stress around their breast cancer diagnosis. They're using these communications to cope," she says.

Online communication was more common in younger women and those with more education. Use also varied by race, with 46 percent of white women and 43 percent of Asian women reporting frequent use, compared to 35 percent of black women and 33 percent of Latinas.

The researchers also found that women who frequently used online communication had more positive feelings about their treatment decision. They were more likely to report a deliberate decision and more likely to be highly satisfied with their decision.

Despite these benefits, the study authors urge caution.

"For some women, social media may be a helpful resource. But there are still questions to answer before we can rely on it as a routine part of patient care," Wallner says. "We don't know a lot about the type of information women are finding online. What are they sharing and what is the quality of that information? We need to understand that before we can really harness the potential of social media to better support patients through their cancer treatment and care."

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Faire du patient le moteur de la recherche et de l'innovation

From www.acteursdesante.fr

Laure GUÉROULT-ACCOLAS, Présidente Association Patients en Réseau
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Usages et attentes des Français à l'égard du digital en matière d'information sur leur santé

From m.ipsos.fr

Dans un monde de santé de plus en plus connecté et digitalisé, 4 français sur 10 restent insatisfaits des informations santé qu’ils trouvent sur internet.
GENS DE MAISON's curator insight, August 3, 6:42 AM
SILVERAGE, OS-CARE, les applicatifs sur lesquels travaillent GENS DE MAISON depuis deux ans déjà pour le maintien à domicile et contre l'isolement social étaient simplement en avance sur leur temps; La révolution qui se dessine dans la santé devrait déjà être là dans le secteur des services à la personne. Malheureusement trop peu de structures et d'opérateurs importants du secteur conduisent à l'évolution du secteur. Si GENS DE MAISON est en avance, d'autres sont en retard...

positive correlation bw electronic comms and higher satisfaction with breast cancer treatment decisions.

From oncology.jamanetwork.com

A study of 2,578 women diagnosed with breast cancer has shown a correlation between electronic communications of all sorts and higher satisfaction with treatment decisions.
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L'usage de la santé mobile pour aider les patients greffés du poumon à se prendre en charge

From www.telemedaction.org

La santé connectée vient améliorer la surveillance du greffon et l'observance des traitements comme viennent de le démontrer deux études.
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