PATIENT EMPOWERMENT & E-PATIENT
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Formes particulières de chirurgie : le cas du cancer du sein #MoiPatient #SpecialCancer #Journeemondialecontrelecancer #WorldCancerDay #WeCanICan #Cancer #hcsmeufr

Formes particulières de chirurgie : le cas du cancer du sein #MoiPatient #SpecialCancer #Journeemondialecontrelecancer #WorldCancerDay #WeCanICan #Cancer #hcsmeufr | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Deux types de chirurgie du cancer du sein     Il est souvent nécessaire de subir une intervention chirurgicale après le diagnostic d'une tumeur maligne du sein. Toutefois, cela n'implique pas forcément l'ablation de la glande mammaire, comme le craignent beaucoup de femmes.   Deux types de chirurgie du cancer du sein Il existe deux…
Lionel Reichardt / le Pharmageek's insight:

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 11:40 PM
Qui sont les e patients ? 
Anthony's comment, March 18, 2016 2:07 PM
Merci pour cette analyse !
Anthony's comment, March 18, 2016 2:07 PM
Merci pour cette analyse !
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Defining Digital Literacy – Exploring perspectives on Digital Literacy


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« L’écriture m’a aidée à surmonter le #cancer. » #Blog #MoiPatient #SpecialCancer #Hcsmeufr 

« L’écriture m’a aidée à surmonter le #cancer. » #Blog #MoiPatient #SpecialCancer #Hcsmeufr  | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Nicole Kultau, blogueuse allemande, parle de son combat contre le cancer sur son blog*. C’est en mai 2010, à l’âge de 41 ans, qu’un cancer du sein lui est diagnostiqué. Lors de cet entretien, elle nous livre les raisons pour lesquelles elle tenait absolument à partager son expérience et nous explique comment elle a réussi à surmonter …

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ACCURAY FRANCE's curator insight, January 15, 9:35 AM

« L’écriture m’a aidée à surmonter le cancer. »

#Blog #MoiPatient #SpecialCancer

 

Nicole Kultau, blogueuse allemande, parle de son combat contre le cancer sur son blog*. C’est en mai 2010, à l’âge de 41 ans, qu’un cancer du sein lui est diagnostiqué.

Lors de cet entretien, elle nous livre les raisons pour lesquelles elle tenait absolument à partager son expérience et nous explique comment elle a réussi à surmonter toutes les épreuves de son traitement.

 

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Facebook, I'm out. Your irresponsibility with patient groups has gone too far.  #esante #hcsmeufr #digitalhealth

Facebook, I'm out. Your irresponsibility with patient groups has gone too far.  #esante #hcsmeufr #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
I have stopped participating on Facebook. I'm leaving my account live (so that my post about why I'm leaving is visible), but everything will be shut off as much as possible, and the rest will be ignored. No Messenger, no more posts on my timeline, no notifications, no tagging, etc. I'll be spending more time on LinkedIn and Twitter. I hope you'll follow those pages, or use the Subscribe form on the right side of my blog page. This isn't an easy decision because it will be harder to keep in touch with everyone in my life, not least my family (including famous daughter and grandchild) and the many friends I've made in my travels. But I've decided we must stand up. The rest of this post explains why; if you don't need that info, ignore it - but please keep in touch. I've concluded that Facebook is incompetent about security of our data and irresponsible about the side effects of what happens when marketers, bots, and monitors interact with the site. It
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Haute Autorité de Santé - Éducation thérapeutique – Patients et soignants, tous engagés !

Haute Autorité de Santé - Éducation thérapeutique – Patients et soignants, tous engagés ! | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

"Dix ans après une première évaluation, la HAS a passé en revue la littérature internationale consacrée à l’efficacité des stratégies d’éducation thérapeutique du patient (ETP) pour les maladies chroniques les plus fréquentes. Les conclusions montrent que la plus-value de l’ETP est rarement mesurée dans de bonnes conditions. Néanmoins, la HAS a relevé plusieurs conditions favorables à sa mise en place. Elle propose des orientations pour renforcer la place de l’éducation thérapeutique dans le parcours de soins du patient et des repères pour les professionnels afin d’évaluer et analyser son efficacité. Explications d’Anne-Françoise Pauchet-Traversat*, du service évaluation de la pertinence des soins et amélioration des pratiques et des parcours de la HAS."

 

 

 


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Examining the Evolution of the Patient-Physician Relationship #esante #hcsmeufr

Examining the Evolution of the Patient-Physician Relationship #esante #hcsmeufr | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

The internet has brought a new challenge into the evolving parameters of the patient-physician relationship: patients have begun equipping themselves with knowledge gleaned from websites, social media, and direct-to-consumer testing to diagnose their own ailments.

An article published in JAMA outlined the obstacles and solutions for physicians who must adapt to the era of increasing patient autonomy.

“Today, some patients arrive at the physician's office having thoroughly researched their symptoms and identified possible diagnoses,” wrote Steven Joffe, MD, MPH, of the Department of Medical ethics and Health Policy at the Perelman School of Medicine at the University of Pennsylvania in Philadelphia. “It will bring new challenges for physicians who must manage the downstream consequences of tests and screens they did not order.”

 

 

 

Patient autonomy has increased steadily for more than half a century. New models of care lean toward emphasizing patient choice, and shared decision making has been the go-to model since the 1980s.

Direct-to-consumer tests and do-it-yourself kits are the new norm in healthcare. For example, using the US Food and Drug Administration (FDA)-approved 23andMe®, consumers can check their risk for a variety of diseases without setting foot in their physician's office. Do-it-yourself electrocardiograms can be conducted using a $99 device and a patient's smartphone.

“But while patients can research their symptoms and order many laboratory and genetic tests online, they will continue to depend on their physicians for advice, procedural expertise, and access to restricted medical services,” Dr Joffe wrote.

 

 

Dr Joffe and the study's co-investigator, Madison K. Kilbride, PhD, also of the Perelman School of Medicine, outlined the 3 main responsibilities of physicians in this new age of patient autonomy. First, physicians must advise and consult patients as they provide thoughts or claims about their diagnoses; second, physicians should continue to provide diagnostic procedures that patients can't access by other means; and finally, physicians must serve as a legitimate source of medical information to clear up any misconceptions and point the patient in the right direction.

“By appreciating how the Internet, social media, and other factors are transforming medical relationships,” the researchers wrote, “physicians will be better able to meet their patients' health care needs in the age of enhanced patient autonomy.”

Reference

Kilbride MK, Joffe S. The new age of patient autonomy. JAMA. 2013;320(19):1973-1974.


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How devices are letting people take control of their own healthcare  #esante #hcsmeufr #digitalhealth

How devices are letting people take control of their own healthcare  #esante #hcsmeufr #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

It's 6am in the yoga room when my Apple Watch beeps three times. It's not helping the mediative mood but I have to look. I've been wearing the watch for two weeks and I'm tracking everything I can about my body. Right now my heart rate is 68 beats per minute. The readout tells me I've stood for a minute each hour for 10 consecutive hours. Through the My Fitness Pal app, I've logged exactly what I've eaten today and learned a glass of Bonsoy is nearly as calorific as a banana. Where my doctor's advice and own self-interest failed to get me doing my 30 minutes of exercise a day, the watch has succeeded.

I now have data about how much I weigh, what I eat, how well I sleep, how much I've walk and how hard my heart is working. If I am prepared to share some of this information with my insurance company I could get a discount on my life cover. But what I am doing is just the start when it comes to monitoring my wellbeing. Already, there's a wristband that scans whatever you put into your shopping basket to find out whether it's a good match for your genetic make-up, an app that alerts your doctor when you haven't taken your antipsychotic medication and a box in your bedroom that can sense your heart beat in the living room.

Across the world, healthcare is undergoing a fundamental transformation. As we all live longer, health systems are increasingly dealing with chronic conditions as opposed to the old model of acute care lasting days or weeks. And the promotion and management of healthy lifestyles, to combat the rise of lifestyle diseases, is becoming an increasingly important part of the health mix.

Globally, nearly 28 million wearable devices were sold in the second quarter of 2018. SEE CAPTION INFO

In supporting and propelling that general shift, there has been an explosion in devices, apps and technology designed to record or modify everything from what we eat to how we breathe.

Tech giants such as Google are rumoured to be working on AI-assisted wellness coaches that push you towards healthier menu options where you're dining, or customise workouts and meal plans for you. Apple is making huge investments in both consumer and clinician-level health and wellness technology. These are not sci-fi dreams. These are available or in development now. We have never before had access to this level of information about our health. And we have never before shared this information so widely. We're still figuring out what it means for the way we live, how the medical profession treats us, how public health is managed and how we are insured. How much information is too much?

 
 
 

Globally, nearly 28 million wearable devices were sold in the second quarter of 2018 – a 5.5 per cent increase on the previous year – according to the International Data Corporation. That's $US4.8 billion ($6.7 billion) worth – an 8.3 per cent rise. The IQVIA Institute of Health Data Sciences says there are more than 310,000 health apps now available. The business of keeping well is booming. In October, the Global Wellness Institute reported that the wellness industry, covering everything from spas to apps, was worth $US4.2 trillion in 2017 – a growth of 12.8 per cent over two years which, it says, now represents more than 5 per cent of global output.

Instant genetic information

Diabetes is an area of intense activity in health tech. Between 1980 and 2014 the global population of diabetics nearly tripled to 422 million. For those with type 2 diabetes – the form of the disease that affects 90 per cent of diabetics – which a change of diet can fix the problem. If people can change their food buying behaviour it makes sticking to a healthful diet easier. That's where entrepreneurs like Professor Chris Toumazou come in.

Not long before I met him, Professor Toumazou wanted a chocolate. "I'm not going to not have a chocolate," he says. So at the shop counter, he waved his wristband over his two preferred options: a Snickers and a Mars bar.It flashed green on the Snickers. Based on his DNA, it had determined the bar to be the healthier option. (He has the hypertension gene, not the obesity one).

The wristband and analysis are developments from the Imperial College biomedical engineering professor's company, DnaNudge. The London-based company has developed palm-sized micro-labs which do on-the-spot DNA analysis for key risk factors – including diabetes and hypertension. It also looks for genetic markers that reveal how well substances including carbohydrates, proteins, saturated fat, caffeine and sodium are metabolised. The data is encrypted and uploaded to the user's app and wristband. They then scan or photograph foods to find out if an item is healthy for them.

 

The object is to help people gradually change how they shop by being able to quickly tell which food options are best for them. For example, someone with a poor ability to break down fat will be guided away from foods high in fats.

In October, the company announced a year-long trial of the technology with a group of 1000 pre-diabetic customers of British supermarket chain Waitrose who will try to reduce their risk of developing the disease. Toumazou hopes to be rolling the technology out commercially in key global markets, including Australia, by the end of 2019.

There are a number of startups using DNA to direct eating behaviour but large companies are also getting in on the act. Nestle in Japan has a Wellness Ambassador programme. Subscribers to the programme upload pictures of their meals onto photo-sharing app Line, the food image is then analysed for its nutritional content. Users can also submit their DNA to a third party for analysis. On the basis of all this data, Nestle makes tailored diet and recipe recommendations. It also proposes particular supplements or kale and fruit smoothies for use in the Nestle Dolce Gusto machine.

DnaNudge says that when the technology is fully commercialised, the company will have booths in every supermarket where a shopper could swab their cheek and pick up a wristband complete with their genetic information 15 minutes later. The micro-lab cartridge with the DNA sample would be destroyed immediately afterwards. Toumazou is intent on making the technology affordable; he says the hardware will retail for tens of dollars and there will be a small subscription fee for the app – which could branch into monitoring inactivity levels, offering meal plans and building social networks of people with similar conditions.

 
 

Toumazou says decades of healthy eating advice has failed to stem a global obesity epidemic. Something needs to disrupt that tide. "It's got to be very simple so people make small changes, without really affecting their behaviour too much in the short term," he says.

Chronic condition management

By taking a long-term approach, Australian tech start-up Perx is hoping to crack chronic condition management. According to the Australian Institute of Health and Welfare, half of the Australian adult population has one of eight chronic conditions – arthritis, asthma, back pain, cancer, cardiovascular disease, chronic obstructive pulmonary disease, diabetes and mental health conditions – and 39 per cent of potentially preventable hospitalisations were due to these eight conditions.

Through a cluttered bookshop on Bourke Street, Surry Hills, in Sydney, and up a winding staircase, old high school friends Scott Taylor and Hugo Rourke have set up an office for Perx, an app that encourages people to stick to clinical treatments through gamification. The young co-founders are bright-eyed, wearing matching branded T-shirts, Apple Watches and physiques that suggest participation in amateur rowing or rugby union teams. They sit in their sparse, small meeting room, a blank white board against one wall.

Users of Perx have to upload evidence that they have taken their medication, a photo perhaps. They are then sent a simple game to play which offers the possibility of winning a prize such as movie tickets or a donation to their favourite charity.

Imagine a contact lens that continuously monitors diabetics' blood glucose levels from their tear drops and transmits the data to an app.  Google

The start-up is partnering with the NSW Health Sydney service, Diabetes NSW and ACT and Novartis, among others, which pay a licence fee for the technology; for the end user, the app is free. Data from the users is encrypted and aggreggated and general reports are sent to the participating organisations about the level of the groups' adherence. They have several thousand users.

Perx began as a side project when Taylor was working in private banking and Rourke was a consultant across a number of consumer industries. Both men had family members struggling to manage different chronic conditions and they realised how few behavioural economics tactics were being used in the health sector. Two years after they started, the team now numbers seven (who are hard at work in a small room adjoining the meeting room) and a further three people are about to join the company.

"It's pretty rapid growth given that this time last year it was three guys in a room in Bondi," says Taylor. "We're super excited about it."

There is plenty of room to grow since 230,000 hospitalisations a year in Australia are because people fail to take their medications as prescribed. In Europe the problem is the cause of 190,000 avoidable deaths.

Dr Harry Nespolon, president of the Royal College of Australian General Practitioners, says the role of the GP will evolve, and become more central.  RACGP

"Healthcare has traditionally suffered from top-down direction, not treating the patient as a person who can manage their own care," says Rourke. "If we can empower people, health will be in a better place."

The invisible doctor

At the Consumer Electronics Show conference in Las Vegas, run by the Consumer Technology Association, wellness and health technology formed a large part of this year's new products. There were lots of cutting-edge devices making huge claims: E-vone smart shoes can detect a fall and call an emergency contact; a magnetic attachment for Motorola phones, which can measure respiratory rate, blood pressure, body temperature and blood oxygen levels; a Somnox robot pillow which glows and contracts as the user cuddles it in bed, all the while detecting carbon dioxide, sound and movement.

But in terms of the leading edge, few companies scrape it so closely as Emerald Innovations. It isn't in the business of wearables, but "invisibles".

Emerald Innovations, a Boston start-up led by MIT professor and Macarthur "genius" prize winner Professor Dina Katabi, has already put hundreds of its Wi-Fi-like boxes in homes in the United States. The Emerald is able to detect a user's posture, gait, heart beat and breathing without ever touching them. Without even being in the same room. Katabi says the technology could herald a new era of independence for people with serious conditions or older people, and could transform the way we conduct clinical trials, with pharmaceutical companies able to take continuous readings from trial participants to assess a drug's efficacy. In a TED talk, Katabi said the device has even been deployed in homes of people with depression and anxiety.

"Every single move that we make – even when we take a breath, or the pulsing of our blood – changes the electromagnetic waves around you," Katabi tells AFR Weekend. "Our idea is to have a sensitive device that can detect changes in electromagnetic waves, and use the advances in machine learning to interpret those changes so we can refer the physiological signal to the end user."

The end user may be a clinician monitoring a patient's condition remotely, an adult child concerned about an elderly parent or a drug company conducting a clinical trial.

Trials in the US for people with Parkinson's have been able to detect when a patient's medication has started to wear off by assessing their movement, and has helped doctors adjust doses accordingly. The traditional alternative has been sporadic visits to doctors who assess movement visually within a consultation.

Katabi says that the device use is based on the consent of the person monitored, that they can determine who gets what data. However, she says, just like you don't have to inform your house guests if you have a baby monitor or security camera, she expects that the user would not have to notify any guests that an Emerald box was in use, despite the fact that it could monitor their vital signs too (though their information won't be stored).

Perx co-founders Scott Taylor (left) and Hugo Rourke (right). Perx is hoping to crack chronic condition management. Kate Geraghty

"Getting information on anyone is getting information that they may consider private," she says. "But at the same time, you compare it to the alternative. For an older person who lives alone, what are their options? Putting a camera in the home would be way more invasive of privacy – as would asking a carer to live with them. It's really about trying to find the right trade-off to deliver something that can provide a lot of gain, while managing the privacy issue in the proper way."

Public health implications

A study published in the Digital Medicine journal, which analysed studies and trials of the efficacy of mobile health apps for things such as managing weight or mental health, found evidence that while some worked, overall the quality of the studies were too poor to reach any conclusions.

Professor Tim Shaw of the Digital Health Co-operative Research Council, which launched this year with $55 million worth of federal government funding, agrees.

"It's a bit like where pharmacy was in the 1800s. It was totally unregulated. You could buy a drug for just about any condition and it was largely financially driven. At the moment, people are building apps for $3, just as I'm sure you could buy a pill for leprosy for $3 back in the 1800s, and there's not a lot of evidence as to how that actually impacts on health," he says. "That's changing."

The US Food and Drug Administration has just cleared two Apple Watch medical apps – one that can take an electrocardiogram by the user touching a button on the series 4, and another that can detect signs of atrial fibrillation and warn the wearer. In Britain, the National Health Service has its own apps library, which recommends apps for everything from managing panic attacks to blood clots, and indicates which of these are undergoing NHS testing. Here in Australia, the CSIRO and Therapeutic Goods Administration are looking into how to regulate the emerging medical devices industry.

"As apps become part of how we deliver care – because we are heading towards prescribing apps – we will have a smaller number of evidence-based apps and devices that have impact," Shaw says.

The Digital Health CRC is investigating how all these data sets being created by personal apps and devices, and in clinical environments, can be utilised to improve individual and public health. The infrastructure supporting this is lacking, says Shaw. "It's like we have well and truly made it to Mars, but we dragged the rocket to the launch pad with a horse and cart," he says. "We have these fundamental failures in the underpinnings about how data is connected together."

This data, when combined with augmented intelligence, could shift the way the healthcare system works. Shaw says that at present, for instance, Sydney's Royal North Shore Hospital can predict that on the weekend it might have five people show up with a broken leg, four with influenza and 53 heart attacks. "What we can't predict is who those 53 people are that will have those heart attacks and reach out to them two months before and stop it happening. This is the really interesting piece that AI can contribute to; our predictive ability to make decisions on people's trajectories."

The US Food and Drug Administration has just cleared two Apple Watch medical apps – one that can take an electrocardiogram by the user touching a button on the series 4, and another that can detect signs of atrial fibrillation and warn the wearer.  Bloomberg

It might be, Shaw says, that a patient on a trajectory to a heart attack on the basis of data such as their heart rate, activity levels and other information might pop up on a doctor's computer. The doctor might then call in their patient to prescribe lifestyle changes and potentially medication that could prevent a catastrophic event.

Meanwhile, for healthy people and those with chronic conditions alike, having access to personal and continuous data about their health and wellbeing will see them more empowered in their relationships with clinicians.

"You're almost getting the emergence of expert consumers that understand their own data best, and can start to work much more collaboratively with the clinician in terms of what matters to them," he says.

New roles may be created within medicine, says Shaw. People can manage their lifestyle and chronic conditions largely on their own, when supported by technology. The remote monitoring of these things could mean the creation of a something like a virtual coach, who may co-ordinate different aspects of an individual's health and wellbeing and call in consultants or doctors when needed.

Dr Harry Nespolon, president of the Royal College of Australian General Practitioners, says the role of the GP will evolve, and become more central. The GP could monitor a thousand patients at once as they upload their data about sugar levels, heart rate and the like, but only need to call in a few for consultations. The lower-value consultations will start to disappear; managed by patients themselves, nurses or even pharmacists.

"It's exciting," he says. "It will help patients understand what they're doing better – whether they do anything about that is going to be their choice."

Privacy and data

The implications of this personal health data go beyond healthcare. It could change the way some industries do business.

For a few years now, MLC has been offering discounts on life insurance premiums for policy holders who agree to share their steps data with the insurer. In return for demonstrating that they are walking at least 37,500 steps a week for 30 weeks out of 40, the policy holders get a 5 per cent annual discount on their premium; if they don't meet the target, the premium rises the following year. Just under 5000 people are enrolled in the programme. The data from their Fitbits, Apple Watches or other activity trackers is sent to a third party, encrypted and then the step count alone is passed on to MLC for verification. For the insurer, it's a way to not only make their customers healthier – and therefore lower risk – but also to build a closer relationship with them.

For a few years now, MLC has been offering discounts on life insurance premiums for policy holders who agree to share their steps data with the insurer. 

Last year, MLC's head of retail, Sean McCormack, broke his sternum in a car accident on the way to Tullamarine Airport in Melbourne. He went from averaging about 15,000 steps a day, to nothing. In the future, McCormack would like the insurance company to notice such a change and make contact. They could say: 'Hey Sean, we've noticed you're really inactive. Something seems to have happened. Is everything all right? Is there anything we can do to help you?'" And then signpost things such as recovery tools or programmes. "This positive customer engagement I think is the real opportunity for us in the future," he says.

Technologies such as the in-development contact lens that monitors blood glucose levels or heart-rate monitors are also of interest. It could change the way companies underwrite customers, able to show that while an individual has a chronic condition, it is well managed and therefore a lower risk. "It's really, really exciting," he says.

For Dr Lisa Carver, a sociologist at the Queens University in Canada, the scenario put forward by MLC sounds terrifying.

Dr Carver has raised concerns that the multiple sets of health and wellness data that stream into the ether from our devices, phones, apps, watches could be used to create a wellness score report – much like the financial credit reports held on every individual. And just like credit reports, they would be compiled without the participation or notification of individuals, she says, and potentially used to restrict access to various services, such as health insurance (in countries where insurers can charge or refuse policies to individuals who present high risk), or even medical procedures in public health systems.

"These programmes can become gatekeepers," she says. "Just like credit reports, they may be full of errors." Carver paints a hypothetical picture of a wine enthusiast, who spends time researching fine wine, enjoying a moderate amount but not drinking beyond limits. Perhaps this person's data is skewed because they're wearing their heart rate monitor wrong, or they break their leg and are rendered sedentary. And say that person also ended up requiring a liver transplant in a public health system. "What concerns me is if your app, browser and credit card history linked to wine is added to health data, all of these factors combined could end up with you being told you don't get a liver transplant because you're labelled by your 'health report' data profile as an alcoholic.

"We're sitting here like it's our birthday. We have all these apps we're opening up and we're just jumping right in there," says Carver. "It's too easy for this technology to just become part of life. They'll be ingrained so completely that it'll be impossible for any government to step in and clean it up, because they'll be so integrated into everything. And that really worries me."

Greg Williams, lead author of the CSIRO's Future of Health report, says he is optimistic about the role of technology in supporting individual health and wellbeing, but many things need to be got right. Ensuring equal access to the technology is critical. On privacy, he says: "The funny thing is that none of us have much privacy at all, really. It's just a matter of how aware of that you are."

And on that note, my Apple Watch has beeped. It's time for me to focus on breathing for one minute. I can relax now.


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Cancer Patients and Social Media #esante #hcsmeufr #digitalhealth

Cancer Patients and Social Media #esante #hcsmeufr #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

Oncologists should help cancer patients be savvy about social media, a recent reviewargued.

Judicious patient use of social media can improve health outcomes, according to an earlier survey. However, benefits of social media for cancer patients, such as psychosocial support and patient engagement, can be offset by drawbacks including misinformation and privacy violations.

 
With social media's potential for both benefits and harms for cancer patients, oncologists and other healthcare providers have an obligation to help patients use social media wisely, researchers wrote this month in Journal of Oncology Practice.

"Oncology professionals are encouraged to speak with their patients about social media and to suggest best practices to enjoy the positive and circumvent the negative aspects of social media. As social media platforms continue to modify the social landscape, the oncology community must recognize and act on their influence on patients with cancer," the researchers wrote.

The researchers highlighted five benefits for cancer patients from social media:

1. Promotes patient engagement and empowerment

The researchers reviewed 170 studies of patients using information technology, which showed 89% of the studies found positive impacts on health, such as weight loss. In addition, 83% of the studies found enhanced patient engagement, such as text messaging for diabetes patients to access clinical data.

The researchers also found social media can help empower patients by giving them an opportunity to mentally process their cancer experience. Earlier research has shown empowered patients are more likely to attend checkups and screenings.

2. Provides psychosocial support

Earlier research has associated social support with better physical and mental health. Social media communities can help cancer patients who do not have in-person social support by reducing social isolation. Social media can also help cancer patients have conversations about emotional, spiritual, and physical treatment barriers.

3. Offers informational support

Social media can help cancer patients find oncology information. Social media can also spark incidental learning, such as hashtag searches on Twitter that inadvertently connect cancer patients with online support communities. Video platforms like YouTube can overcome healthcare literacy barriers.

 

4. Enhances the physician-patient relationship

Cancer patients should not use social media to interact with their physicians, but accessing oncology information through social media can increase confidence in relationships with physicians. Experiencing physicians sharing oncology information on social media can improve patients' perceptions of medical professionals in general and improve relationships with their healthcare providers.

5. Find clinical trials and cancer research education

Social media can help cancer patients find clinical trials for particularly isolated populations who can be reached through social media advertising. Patients with rare forms of cancer can join social media groups targeted at their diagnosis, where they can connect with trial recruiters and other research opportunities.

The researchers also highlighted five social media drawbacks for cancer patients:

1. Substitute for in-person support

"Social support from social media ranges from infrequent and unstructured to regularly scheduled formal online support groups," the researchers wrote. Behavior on social media can interfere with in-person assessment and treatment. Social media use can become impulsive, which could impede in-person interactions.

2. Misinformation

Online health information is often unreliable compared to information from healthcare providers. Online research should form building blocks for conversations with caregivers. Cancer patients should also keep a vigilant eye on conflicts of interests, such as healthcare professionals not disclosing their ties to medical supply and pharmaceutical companies, then promoting them on social media. With the untrustworthy nature of information online, cancer patients should be skeptical of information gathered through social media and fact check it with healthcare providers.

3. Financial exploitation

For cancer patients, financial perils on social media include unproven cancer cure claims, such as vitamins and special diets. Another risk is medical ads on social media that promote unnecessary procedures and treatments.

4. Information overload

Cancer patients who have internet access can be overwhelmed with medical information. Earlier research has linked information overload with anxiety over the inability to comprehend the avalanche of information and harness it for decision-making.

5. Compromised privacy

Social media users face privacy risks. Social media are public forums, so cancer patients should avoid posting private information. Patients should avoid sharing information that could be identifiable, including age, disease type, sex, and location.

How Physicians Can Help

There are three primary ways healthcare providers can help cancer patients navigate social media safely and effectively, according to the Journal of Oncology Practiceresearchers.

  • Experience cancer-related social media, including exposure to content that patients are viewing.
  • Help patients navigate the benefits and drawbacks of social media, such as by gauging the social media sophistication of a patient or cautioning patients to be skeptical about information found through social media.
  • To limit privacy risks, physicians should not offer medical advice via social media or interact with their own patients via social media.

 

This report is brought to you by HealthLeaders Media.


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Les entreprises confrontées à la hausse du nombre de « salariés #aidants » #cancer #hcsmeufr 

Les entreprises confrontées à la hausse du nombre de « salariés #aidants » #cancer #hcsmeufr  | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Les entreprises confrontées à la hausse du nombre de « salariés aidants »
Les besoins liés à l’aide des personnes dépendantes sont croissants et ont un impact sur l’absentéisme. Pourtant l’accompagnement des actifs qui assument cette charge n’en est qu’à ses balbutiements.

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Les entreprises confrontées à la hausse du nombre de « salariés aidants »

Les besoins liés à l’aide des personnes dépendantes sont croissants et ont un impact sur l’absentéisme. Pourtant l’accompagnement des actifs qui assument cette charge n’en est qu’à ses balbutiements.

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Online Health Information: Is It Reliable? #esante #hcsmeufr #digitalhealth

Online Health Information: Is It Reliable? #esante #hcsmeufr #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

Many older adults share a common concern: “How can I trust the health information I find on the Internet?”

There are thousands of medical websites. Some provide reliable health information. Some do not. Some of the medical news is current. Some of it is not. Choosing which websites to trust is an important step in gathering reliable health information.

 

Where Can I Find Reliable Health Information Online?

The National Institutes of Health website is a good place to start for reliable health information.

As a rule, health websites sponsored by Federal Government agencies are good sources of information. You can reach all Federal websites by visiting www.usa.gov. Large professional organizations and well-known medical schools may also be good sources of health information.

MedlinePlus.gov is a website from the NIH’s National Library of Medicine that has dependable consumer information about more than 1,000 health-related topics. Use their online tutorial to learn how to evaluate health information online.

Questions to Ask Before Trusting a Website

As you search online, you are likely to find websites for many health agencies and organizations that are not well-known. By answering the following questions, you should be able to find more information about these websites. A lot of these details might be found in the website’s “About Us” section.

1. Who sponsors/hosts the website? Is that information easy to find?

Websites cost money to create and update. Is the source of funding (sponsor) clear? Knowing who is funding the website may give you insight into the mission or goal of the site. Sometimes, the website address (called a URL) is helpful. For example:

  • .gov identifies a U.S. government agency
  • .edu identifies an educational institution, like a school, college, or university
  • .org usually identifies nonprofit organizations (such as professional groups; scientific, medical, or research societies; advocacy groups)
  • .com identifies commercial websites (such as businesses, pharmaceutical companies, and sometimes hospitals)

2. Who wrote the information? Who reviewed it?

Authors and contributors are often, but not always, identified. If the author is listed, ask yourself—is this person an expert in the field? Does this person work for an organization and, if so, what are the goals of the organization? A contributor’s connection to the website, and any financial stake he or she has in the information on the website, should be clear.

Is the health information written or reviewed by a healthcare professional? Dependable websites will tell you where their health information came from and how and when it was reviewed.

Trustworthy websites will have contact information that you can use to reach the site’s sponsor or authors. An email address, phone number, and/or mailing address might be listed at the bottom of every page or on a separate “About Us” or “Contact Us” page.

Be careful about testimonials. Personal stories may be helpful and comforting, but not everyone experiences health problems the same way. Also, there is a big difference between a website, blog, or social media page developed by a single person interested in a topic and a website developed using strong scientific evidence (that is, information gathered from research).

No information should replace seeing a doctor or other health professional who can give you advice that caters to your specific situation.

3. When was the information written?

Look for websites that stay current with their health information. You don’t want to make decisions about your care based on out-of-date information. Often, the bottom of the page will have a date. Pages on the same site may be updated at different times—some may be updated more often than others. Older information isn’t useless, but using the most current, evidence-based information is best.

4. What is the purpose of the site?

Why was the site created? Know the motive or goal of the website so you can better judge its content. Is the purpose of the site to inform or explain? Or is it trying to sell a product? Choose information based on scientific evidence rather than one person’s opinion.

5. Is your privacy protected? Does the website clearly state a privacy policy?

Read the website’s privacy policy. It is usually at the bottom of the page or on a separate page titled “Privacy Policy” or “Our Policies.” If a website says it uses “cookies,” your information may not be private. While cookies may enhance your web experience, they can also compromise your online privacy—so it is important to read how the website will use your information. You can choose to disable the use of cookies through your Internet browser settings.

6. How can I protect my health information?

If you are asked to share personal information, be sure to find out how the information will be used. Secure websites that collect personal information responsibly have an “s” after “http” in the start of their website address (https://) and often require that you create a username and password.

BE CAREFUL about sharing your Social Security number. Find out why your number is needed, how it will be used, and what will happen if you do not share this information. Only enter your Social Security number on secure websites. You might consider calling your doctor’s office or health insurance company to give this information over the phone, rather than giving it online.

These precautions can help better protect your information:

  • Use common sense when browsing the Internet. Do not open unexpected links. Hover your mouse over a link to confirm that clicking it will take you to a reputable website.
  • Use a strong password. Include a variation of numbers, letters, and symbols. Change it frequently.
  • Use two-factor authentication when you can. This requires the use of two different types of personal information to log into your mobile devices or accounts.
  • Do not enter sensitive information over public Wi-Fi that is not secure. This includes Wi-Fi that is not password protected.

Be careful what information you share over social media sites. This can include addresses, phone numbers, and email addresses. Learn how you can keep your information private.

7. Does the website offer quick and easy solutions to your health problems? Are miracle cures promised?

Be careful of websites or companies that claim any one remedy will cure a lot of different illnesses. Question dramatic writing or cures that seem too good to be true. Make sure you can find other websites with the same information. Even if the website links to a trustworthy source, it doesn’t mean that the site has the other organization’s endorsement or support.

Health and Medical Apps

Mobile medical applications (“apps”) are apps you can put on your smartphone. Health apps can help you track your eating habits, physical activity, test results, or other information. But, anyone can develop a health app—for any reason— and apps may include inaccurate or misleading information. Make sure you know who made any app you use.

When you download an app, it may ask for your location, your email, or other information. Consider what the app is asking from you—make sure the questions are relevant to the app and that you feel comfortable sharing this information. Remember, there is a difference between sharing your personal information through your doctor’s online health portal and posting on third-party social media or health sites.

Social Media and Health Information

Social media sites, such as Facebook, Twitter, and Instagram, are online communities where people connect with friends, family, and strangers. Sometimes, you might find health information or health news on social media. Some of this information may be true, and some of it may not be. Recognize that just because a post is from a friend or colleague it does not necessarily mean it’s true or scientifically accurate.

Check the source of the information, and make sure the author is credible. Fact-checking websites can also help you figure out if a story is reliable.

A Quick Checklist

You can use the following checklist to help make sure that the health information you are reading online can be trusted. You might want to keep this checklist by your computer.

  1. Is the sponsor/owner of the website a Federal agency, medical school, or large professional or nonprofit organization, or is it related to one of these?
  2. If not sponsored by a Federal agency, medical school, or large professional or nonprofit organization, is the website written by a healthcare professional or does it reference one of these trustworthy sources for its health information?
  3. Why was the site created? Is the mission or goal of the website sponsor clear?
  4. Can you see who works for the agency or organization and who authored the information? Is there a way to contact the sponsor of the website?
  5. When was the information written or webpage last updated?

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Un patient majeur peut-il refuser un soin ou un traitement qui est vital pour sa santé ?  #esante #hcsmeufr 

Un patient majeur peut-il refuser un soin ou un traitement qui est vital pour sa santé ?  #esante #hcsmeufr  | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Dans cette rubrique consacrée au droit, ActuSoins répond aux questions juridiques des professionnels de santé. Toutes les réponses données sont celles de
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Santé : quelles sont les maladies les plus recherchées sur Internet ? - Le Parisien

Santé : quelles sont les maladies les plus recherchées sur Internet ? - Le Parisien | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Un site de pharmacie en ligne s’est intéressé aux recherches en ligne des Français en 2018.

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Littératie en santé et promotion de la santé en contexte - Don Nutbeam, Diane Levin-Zamir, Gill Rowlands, 2018

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Most Americans Lie to Their Doctors  #esante #hcsmeufr #digitalhealth

Most Americans Lie to Their Doctors  #esante #hcsmeufr #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
As many as 4 out of 5 Americans withhold important information from their doctor that could prove crucial to their health, a new study shows.
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Survey Weighs Effects of Patient Access to Health Info Online  #esante #hcsmeufr #digitalhealth

Survey Weighs Effects of Patient Access to Health Info Online  #esante #hcsmeufr #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

wenty years ago, obtaining the latest information on health and well-being meant a trip to the library or the family physician's office for most people. But today, finding up-to-date health information can be as easy as tapping on a smartphone or clicking a mouse.

 

Having greater access to health information online has affected much more than how people take care of themselves. The results of a survey of family physicians conducted during the AAFP Family Medicine Experience in New Orleans in October show that easy access has substantially changed the ways FPs practice and communicate with patients.

"Our survey uncovered an interesting dynamic at play," said Robert Porter, M.D., editor-in-chief of the Merck Manuals, which conducted the survey, in a news release.(www.prnewswire.com) "While the ease and availability of online medical information instills confidence in family physicians, they believe 'Dr. Google' has the potential to introduce anxiety among patients."

Survey Details and Highlights

In the survey, family physicians answered seven questions on the increased availability of medical information online and its effects on patient and physician behaviors. A total of 240 family physicians who attended the conference completed the survey.

STORY HIGHLIGHTS
  • Results of a survey conducted during this year's Family Medicine Experience illustrate the effects of patients' access to online health information on the physician-patient relationship.
  • Of the 240 family physicians who took the survey, 97 percent reported that a patient presented to their office with misinformation from an online source.
  • The AAFP and other organizations have published guides that help patients find and evaluate online health sources for reliability.

Survey results revealed some positive aspects to patients' increased access to information. Sixty-four percent of FPs thought the expanded availability of medical information made patients more fluent in medical topics. Also, 60 percent of FPs thought the frequency of patient visits rose because a patient had read about a symptom or treatment online.

But that enhanced access also produced some unexpected outcomes. Although 82 percent of FPs thought that patients contacted their office or a nurse's line with a medical question more frequently than in previous years, 12 percent of FPs thought that patients contacted their office less frequently, and 29 percent thought that increased access to information had caused a decrease in the frequency of patient visits in recent years.

FPs also stated overwhelmingly that access to more information did not equal access to better information. Ninety-seven percent of FPs who took the survey reported that patients presented to their office with false or inaccurate information at some point.

In another point of concern, 79 percent of FPs thought the increased availability of medical information online made patients more likely to question their diagnosis or recommendation.

"In some ways, it's made appointments more complicated," one physician commented. "Patients search their symptoms online and see the worst-case scenarios, rather than the most common scenarios, so they come into appointments with more anxiety."

As a result, FPs often found themselves having to separate fact from fiction and steer patients in the right direction to get the most reliable information.

"We run into problems when patients go to online sources that aren't evidence-based medicine," explained another physician. "But patients aren't going to stop looking up their symptoms on the internet, so it's up to physicians to direct them to trusted sources."

A high percentage of FPs also reported using online sources in their own practices. Eighty-three percent of the FPs who took the survey said they regularly confirm a treatment or diagnosis using an online medical resource. Another 89 percent said that having regular access to medical information online made them more confident when interacting with patients.

Finding Reliable Sources: The Bottom Line

Anyone who uses the internet knows there's an enormous amount of health information online -- much of it false or misleading. But figuring out which sources are reliable is actually not that difficult. The AAFP,(familydoctor.org) the National Library of Medicine(medlineplus.gov) and other agencies have all published guides that offer tips for finding and evaluating online health resources for reliability.

When talking about health, it's important that both family physicians and their patients use trustworthy sources. That's key to ensuring that physicians and their patients are on the same page when discussing care options, according to Jen Frost, M.D., medical director for the AAFP Division of Health of the Public and Science.

"The increased access to online health information has the potential to increase a patient's engagement in and understanding of their care," Frost told AAFP News. "But misinformation can make patient care more difficult and has the potential to cause harm.


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Weber study finds Americans don’t really trust social media for health info  #esante #hcsmeufr #digitalhealth

Weber study finds Americans don’t really trust social media for health info  #esante #hcsmeufr #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

A new survey from comms giant Weber Shandwick profiling how U.S. adults access, use and feel about health-related information finds that most American social media users who regularly seek health information are concerned about incorrect or misleading medical information on social media—and few have found health information on social media to be accurate.

The Weber survey, The Great American Search for Healthcare Information, in partnership with KRC Research, focused on Healthcare Information Seekers—those Americans who look for health-related information at least once per year, excluding doctor appointments. This large-scale study of Americans was designed to help communicators and marketers in the health sector guide their strategic and tactical content decisions.

“In a time of information-overload and cynicism inflamed by ‘fake news,’ communicators and marketers face new and unique challenges around how to effectively engage with their customers,” said Laura Schoen, president of Weber’s Global Healthcare Practice, in a news release. “But as the demand for online information grows, and as the landscape continues to be increasingly muddied by inaccurate—and at times dangerous—information, the healthcare and pharmaceutical sectors have a greater responsibility than ever before to find ways to create and deliver engaging, relevant and factual information.”

Americans have healthy doses of skepticism about health information on social media

Two-thirds of American Healthcare Information Seekers (67 percent) report that they see health information on social media. The types of information they see on social media are mostly wellness advice (56 percent) and advertisements for treatments or medications (52 percent).

Seeing is not necessarily believing, however. More than eight in 10 Healthcare Information Seekers who have seen health information on social media (83 percent) say they are concerned about incorrect or misleading medical information. Only 35 percent report that, in their experience, the information is mostly accurate. Slightly more, 38 percent, say they have no idea of its veracity and 27 percent say it is mostly inaccurate. These numbers indicate that people are exposed to health information through social media, but recognize how hard it is to know what is true, especially in the face of complex information and seemingly conflicting facts or studies.

Particularly compelling about this data is that concerns about and experiences with accuracy of social health information are consistent across generations. For example, the youngest cohort in our study, Gen Z, is just as likely to be concerned about incorrect or misleading information as the much older Boomer generation (91 percent and 87 percent, respectively). This suggests that social media comfort and proficiency do not have a bearing on perceptions of legitimacy, leading to the conclusion that it is the content or channel that is the challenge for health-related information communicators.

While health information on social media has a credibility problem, Healthcare Information Seekers exposed to it identify several solutions for instilling more confidence: social healthcare information should be cited by a medical professional (43 percent), it should cite a scientific study (38 percent), it should be associated with a trusted brand (37 percent) and it should be cited by a trusted school or research organization (36 percent). The findings show a demand and opportunity for medical information on social media to be verified by respected third-party sources.

Medical professionals—not necessarily doctors—provide the most satisfactory information 

When it comes to satisfactory experiences with the information sources that are used, medical professionals far surpass any other source. At the very top of the list that users of health information were ‘very satisfied’ with are physician’s assistants/nurses and eye doctors (tied at 66 percent).

Medical information websites fall just below average in terms of satisfaction (39 percent) despite their widespread use by 53 percent of Healthcare Information Seekers. This disparity may point to a significant opportunity for these platforms to demonstrate that there are medical professionals “behind” the content.

Physicians may have a Millennial problem

The Millennial generation is least likely to be very satisfied with the information provided by medical doctors. In evaluating other attitudes toward physicians, the study suggests that doctors may be contending with a Millennial trust challenge. In addition to their lower satisfaction levels with information from doctors (on a basis relative to other generations), Millennials are the least likely generation to say they always listen to their doctor(s), the most likely to believe that online health-related information is as reliable as that from medical professionals and the most likely to say they trust their peers more than medical professionals.

A guide to engaging Americans with healthcare information 

There is a ravenous appetite for healthcare information in the United States today. Healthcare and biopharmaceutical companies and brands should recognize that a sizeable majority of Americans are seeking health information.

“Healthcare companies need to realize that the proliferation of misinformation and lack of trust online is actually an opportunity,” said Stacey Bernstein, executive vice president and global director of digital health at Weber Shandwick, in the release. “As some of the most information-rich, research-driven organizations in the world, they are poised perhaps better than anyone else to provide the credible and relevant information that consumers are so actively seeking.”

Based on its research, Weber Shandwick recommends basic guidelines for successfully interacting with customers. Below are a sample of guidelines; more can be found in our full report.

  • Design your content for discovery. Consumers find healthcare information in a variety of places. By building content that is discoverable across multiple channels – online and offline – you can intersect your customers across their journey and ensure that they find the credible information they’re looking for.
  • Use succinct, clear and plain language in your communications. Recognize that people are swimming in information and overwhelmed by the volume, creating confusion and perceptions of conflicting facts.
  • Customize your approaches. Although there is surprisingly little difference in the number of Healthcare Information Seekers across generations, Gen Z and Millennials have different medical needs than Boomers and the Silent/Greatest generation, so content should deliver against those unique experiences. Further, Americans respect specialized expertise: different sources are credible on different health topics/issues.
  • Prove your online credibility from the outset. Trust is earned, and there’s an uphill battle to be fought to convince customers that information online, especially found on social media, is credible and trustworthy. Showcase your research-driven approach, include validation from medical professionals and experts, and bring your partners into the fold. Shore up attention-getting and awareness-building communications via social media channels with supporting evidence and facts from credible sources.
  • Provide medical doctors with support to find ways to build trust with Millennials. A perception that peers are as capable as doctors of providing healthcare information, or potentially that healthcare information can be “crowdsourced,” is concerning. Physicians need to understand the root cause of this sentiment and address it before it is too late.

See the full study here.


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#CANCER de la #PROSTATE : De nombreux patients mettent en balance durée et qualité de vie et qualité de vie #Movember #Hcsmeufr 

#CANCER de la #PROSTATE : De nombreux patients mettent en balance durée et qualité de vie et qualité de vie #Movember #Hcsmeufr  | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
On connaît la question des surdiagnostics et des surtraitements fréquents chez les patients atteints de cancer de la prostate et, associés aux biopsies et aux traitements, parfois superflus, les risques d’effets secondaires sévères. Les patients de mieux en mieux informés et conscients de ces effets indésirables regardent aujourd’hui de plus près les différentes options qui leur sont proposées avec un objectif qui apparaît majeur : éviter l’incontinence et l’impuissance, 2 effets indésirables liés à la chirurgie et la radiothérapie. Selon cette étude présentée à la Conférence 2018 du National Cancer Research Institute (NCRI), les patients récemment diagnostiqués d'un cancer de la prostate déclarent qu'ils échangeraient une partie de leurs chances de survie contre une réduction de ces effets secondaires et un maintien de leur qualité de vie.

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ACCURAY FRANCE's curator insight, December 12, 2018 11:35 AM

On connaît la question des surdiagnostics et des surtraitements fréquents chez les patients atteints de cancer de la prostate et, associés aux biopsies et aux traitements, parfois superflus, les risques d’effets secondaires sévères. Les patients de mieux en mieux informés et conscients de ces effets indésirables regardent aujourd’hui de plus près les différentes options qui leur sont proposées avec un objectif qui apparaît majeur : éviter l’incontinence et l’impuissance, 2 effets indésirables liés à la chirurgie et la radiothérapie. 

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Les «fake news» peuvent-elles menacer votre santé?   #esante #hcsmeufr 

Les «fake news» peuvent-elles menacer votre santé?   #esante #hcsmeufr  | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
AVIS D’EXPERT - Les fausses nouvelles contaminent notre vie quotidienne, en particulier la santé où, à force de brouiller les pistes entre fausses peurs et vrais risques, elles peuvent avoir de graves conséquences.
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Renforcer la prise en compte du point de vue du patient : une priorité pour la HAS #hcsmeufr #esante

Renforcer la prise en compte du point de vue du patient : une priorité pour la HAS  #hcsmeufr #esante | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
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Téléthon : pourquoi rien n’aurait été possible sans les associations de patients  #esante #hcsmeufr

Téléthon : pourquoi rien n’aurait été possible sans les associations de patients  #esante #hcsmeufr | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
AVIS D’EXPERT - Les associations de patients ont donné le coup d’envoi de la recherche sur les maladies génétiques rares. Les industriels du secteur craignaient d’investir ce domaine, faute d’un retour financier assuré.
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Près de 2.000 inscrits sur le nouvel "espace #patient" de l'@APHP #esante #hcsmeufr 

Près de 2.000 inscrits sur le nouvel "espace patient" de l'AP-HP
Le directeur de projet "transformation numérique" de l'Assistance publique-hôpitaux de Paris (AP-HP), Pierre-Etienne Haas, a indiqué le 3 décembre que près de 2.000 comptes avaient été créés par les patients du CHU francilien sur l'espace mis en ligne début novembre.

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GIE_GERS's curator insight, December 7, 2018 9:38 AM
Près de 2.000 inscrits sur le nouvel "espace patient" de l'AP-HP

Le directeur de projet "transformation numérique" de l'Assistance publique-hôpitaux de Paris (AP-HP), Pierre-Etienne Haas, a indiqué le 3 décembre que près de 2.000 comptes avaient été créés par les patients du CHU francilien sur l'espace mis en ligne début novembre.

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#Esante #Data Une base de données collaborative pour le #myélome #cancer #hcsmeufr

#Esante #Data Une base de données collaborative pour le #myélome #cancer #hcsmeufr | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Quatre laboratoires et l’Intergroupe Francophone du Myélome (IFM) décident de mettre en commun leurs données. Objectif : proposer le meilleur traitement aux patients atteints de myélome multiple. Par notre envoyée spéciale à l’ASH, le Congrès mondial d’hématologie qui se tient à San Diego du 1er au 4 décembre 2018.

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ACCURAY FRANCE's curator insight, December 5, 2018 10:30 AM

Quatre laboratoires et l’Intergroupe Francophone du Myélome (IFM) décident de mettre en commun leurs données. Objectif : proposer le meilleur traitement aux patients atteints de myélome multiple. Par notre envoyée spéciale à l’ASH, le Congrès mondial d’hématologie qui se tient à San Diego du 1er au 4 décembre 2018.

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Dilemma: Patient shares a recorded consultation on social media  #esante #hcsmeufr

Dilemma: Patient shares a recorded consultation on social media  #esante #hcsmeufr | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

LMC view: Consider removing the patient from your list

My first question is, ‘why would my patient do this?’ Quickly followed by ‘can they do this?’ and ‘what can I do about it?’

 
For a doctor to be permitted to do this without consequences would surely be unthinkable. So is it right for a patient to post a recording of a consultation with you on Facebook without your approval?

Recording a private conversation without consent for personal use is not illegal,1 but the law is unclear on sharing such information.

As a minimum, arrange to meet the patient to discuss what they have done. Ask why they thought they needed to do this. Did they think you had done something wrong, or is it because they have the habit of sharing everything they do on social media? Personally, I believe it is good for patients to record consultations, as this enables them to review the shared information, so I would remind the patient they can openly record consultations for personal use. Then I would explain that I did not give them permission to share this on social media and if they continue to do so, I will remove them from the registered list, on the basis that this a significant breakdown in the doctor-patient relationship.

If they continue to post consultations on social media I would take steps to de-register the patient, following due process. Depending on what has been posted, I would also consider a formal legal opinion on whether to take further action.

 
 

Dr Elliott Singer is a GP partner in east London and a medical director at Londonwide LMCs


Medicolegal view: Ignore it – such posts usually disappear

The widespread availability of digital recording devices means it has never been easier for a patient to record a consultation.

There is little to be done if a patient records a consultation covertly. If the patient then posts the recording on Facebook or elsewhere on social media, irrespective of whether you have consented to the recording, you have two main options. The first is to take no further action – in most circumstances the recording is unlikely to reach a wide audience and taking action may draw attention to it.

Alternatively, you could contact the patient to explain that the Facebook post has come to your attention and invite them in to discuss your concerns. This will give the patient the opportunity to explain why they shared the recording publicly and provide you with an opportunity to ask them politely to remove it.

You should avoid commenting on or reporting the Facebook post – again, this is likely to draw attention to it and may provoke further comments or a backlash.

Depending on the individual circumstances, it is unlikely there will be an absolute legal remedy to compel the patient to remove the recording. However, if the post contains false or discriminatory information that is intended to damage your reputation, you should seek the advice of your medical defence organisation to establish whether there is a legal recourse is available to you.

It is understandable that GPs may feel frustrated that a patient can post a recording of a consultation without seeking their permission to do so. This can only be substantively addressed by legal reform.

Dr Richard Stacey is head of policy and technical at Medical Protection


GP social media expert: Ask Facebook to take the post down

First, contact the patient and ask them to take the post down. You could invite them to meet you at the practice, in case there is any aspect of the consultation that they would like to discuss. Explain politely that this is in respect of your rights to privacy and also out of duty to other patients who need reassurance that videos or audios of their consultations will not be published on social media.

Also explain that confidentiality and trust are of the utmost importance in the GP consultation and assert that both parties should respect these for the doctor-patient relationship to be meaningful and progressive.

If the patient resists, you can file a complaint through Facebook and request that the post be removed on the grounds that it was published without your consent, and recorded in a doctor’s consultation room. Facebook should consider the appropriateness of videos or audio recordings if done in public locations such as hospitals or surgeries, where one would expect privacy. Advise the patient you have taken this step, restating your reasons for doing so, and invite them to attend another meeting to discuss it.

Remember that the central issue here is the understanding of social media etiquette. In alignment with protocols in health and wellness coaching professions, where consultations may be digitally recorded and shared, practices should give patients clear guidance about the recording of consultations and the boundaries for this when they register. This guidance should include the requirement that any patient who wishes to record a consultation asks for consent beforehand, and that they should confirm they have read and understood the practice’s privacy policy.

Dr Aisha Malik is a portfolio GP and social media consultant in Manchester


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Do Online Health Seekers Trust Social Media? Surprising Results From A New Survey – #esante #hcsmeufr

Do Online Health Seekers Trust Social Media? Surprising Results From A New Survey – #esante #hcsmeufr | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

A new survey profiling how American adults access, use and feel about health-related information finds that most Americans who regularly seek health information are concerned about incorrect or misleading medical information on social media, and few have found health information on social media to be accurate.

These findings are consistent across generations. The survey, The Great American Search for Healthcare Information, was conducted among 1,700 Americans 18 years of age and older. It was commissioned by global communications and marketing services firm Weber Shandwick in partnership with KRC Research.

I find the results of this survey very interesting for a number of reasons. 

Firstly, it’s interesting to learn that the majority of online health seekers are concerned about incorrect or misleading medical information. This reassures me in a way because it means that, contrary to the pervasive belief that the public believes everything they read online, people are actually far more discerning.

It also underscores for me that patients aren’t looking to supplant knowledge from healthcare professionals with the information they find online. They still look to their healthcare providers as the source of credible health information.

 

Note that nurses, pharmacists, and eye doctors score higher than medical doctors in terms of satisfaction. This finding surprised me. The survey suggests that physicians may have a millennial problem.

The Millennial generation is least likely to be very satisfied with the information provided by medical doctors. In evaluating other attitudes toward physicians, the study suggests that doctors may be contending with a Millennial trust challenge. In addition to their lower satisfaction levels with information from doctors (on a basis relative to other generations), Millennials are the least likely generation to say they always listen to their doctor(s), the most likely to believe that online health-related information is as reliable as that from medical professionals and the most likely to say they trust their peers more than medical professionals.


Secondly, I find it disheartening that survey respondents are not finding accurate health information online. We know for a fact that accurate health information does exist online, so why are people not rating it higher?  Medical information websites fall just below average in terms of satisfaction (39 percent).

Finally, I’m a little surprised to learn that concerns about the accuracy of social health information are consistent across generations, including digital natives.

Gen Z, is just as likely to be concerned about incorrect or misleading information as the much older Boomer generation (91 percent and 87 percent, respectively). This suggests that social media comfort and proficiency do not have a bearing on perceptions of legitimacy, leading to the conclusion that it is the content or channel that is the challenge for health-related information communicators.

All of this adds up to a trust and credibility problem we need to urgently address.

A Wake-up Call for Healthcare Professionals

The healthcare industry is still lagging behind in delivering credible and relevant information to patients when and where they need it most.  Healthcare has much to learn from other industries who are adept at mapping the customer journey and providing relevant and timely information at each stage of the journey.

Earning Trust From Online Health Information Seekers

Within each problem lies its solution. To address the trust gap, the authors suggest the following fixes:

Prove your online credibility from the outset

  • information should be cited by a medical professional
  • it should cite a scientific study
  • it should be associated with a trusted brand
  • it should be cited by a trusted school or research organization

Design your content for discovery

By building content that is discoverable across multiple channels – online and offline – you can intersect your customers across their journey and ensure that they find the credible information they’re looking for.

Use succinct, clear and plain language in your communications.

Recognise that people are swimming in information and overwhelmed by the volume, creating confusion and perceptions of conflicting facts.

I would add to this list that it’s important to talk to patients in your offices about the information they find online. For more on this read What’s the Influence of Patients’ Internet Health Information-Seeking Behaviour on the Patient-Physician Relationship?

A Wake-up Call for Healthcare Professionals

In a post published in Physician’s Weekly, primary care physician Mikhail Varshavski, DO, is unequivocal that healthcare professionals’ failure to influence social media is responsible for the rise of misinformation online.

I used to consider the absence of quality physicians online merely a problem of missed opportunity. Now I’ve realized it is much more than that. If misinformation has the power to call in to question the validity of something as grand as an American presidential election, it certainly has the power to influence our patients’ everyday health decisions. The healthcare industry as a whole needs to advocate for more education and focus on this burgeoning global communication platform.

According to a 2017 survey by PM360 Online, only 9% of physicians engage with patients and other health care providers — this includes physicians who reply to comments, join group discussions or share helpful information and links on social media platforms – and as low as 1% of all health care professionals use social media to be content creators — publishing original content via blogs, forums, and websites.

 


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Prendre la mesure de l’aspect #psychologique du #cancer #MoiPatient #SpécialCancer #hcsmeufr #psycho

Prendre la mesure de l’aspect #psychologique du #cancer #MoiPatient #SpécialCancer #hcsmeufr #psycho | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Alf von Kries, psychologue, nous explique pourquoi il est primordial de prendre vraiment le temps d’accepter le diagnostic. Lorsque le diagnostic tombe, la plupart des patients restent en état de choc : leur vie s’écroule et ils sont complètement perdus. Dans un tel contexte, il est primordial d’accompagner la personne concernée. Alf von Kries travaille dans …

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ACCURAY FRANCE's curator insight, December 5, 2018 10:48 AM

Prendre la mesure de l’aspect psychologique du cancer

 

Alf von Kries, psychologue, nous explique pourquoi il est primordial de prendre vraiment le temps d’accepter le diagnostic

 

Lorsque le diagnostic tombe, la plupart des patients restent en état de choc : leur vie s’écroule et ils sont complètement perdus. Dans un tel contexte, il est primordial d’accompagner la personne concernée. Alf von Kries travaille dans un service de psycho-oncologie et sait comment aider les patients à surmonter cette épreuve difficile.

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Pourquoi mentons-nous à notre médecin ? Une étude répond #esante #hcsmeufr

Selon une étude américaine, 60 à 80% des patients ont déjà menti à leur médecin au sujet de certaines informations de santé, notamment leur alimentation ou traitement médical. Des renseignements pourtant cruciaux pour une bonne prise en charge.

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Renaloo's curator insight, December 5, 2018 10:31 AM

Pourquoi mentons-nous à notre médecin ? Une étude répond

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