PATIENT EMPOWERMENT & E-PATIENT
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Are Mobile Health Apps Changing the Doctor Patient Relationship?

Are Mobile Health Apps Changing the Doctor Patient Relationship? | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Mobile Health Apps have made detailed medical information accessible to anyone. Now on a smartphone, you can find drug interactions, diagnosing information and more.
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PATIENT EMPOWERMENT & E-PATIENT
Patients as the healthcare system "missing link" #digitalhealth #hcsmeu #hcsm #epatient
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PHARMA.....CONNAIS TU LES E-PATIENTS?

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

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


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


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


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


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


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


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


E PATIENT : UN PHENOMENE AMERICAIN?


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


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


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


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


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


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


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


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


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


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


Dans cette étude, enfin, il est précisé que :


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


ET EN EUROPE ?


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


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


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


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


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


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


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


EN FRANCE ?


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


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


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


Par contre :


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


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


La conclusion est sans appel sur le sujet :


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


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


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


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


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


ET ALORS ?


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

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


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


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


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


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


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

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


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


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


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


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



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

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


A bon entendeur

Lionel REICHARDT
Le Pharmageek

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Anne Sophie Llanas's curator insight, March 2, 2016 6:40 PM
Qui sont les e patients ? 
Anthony's comment, March 18, 2016 10:07 AM
Merci pour cette analyse !
Anthony's comment, March 18, 2016 10:07 AM
Merci pour cette analyse !
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4 Strategies for Physicians to Address Patient Self-Diagnosis  #hcsmeufr #esante #digitalhealth

4 Strategies for Physicians to Address Patient Self-Diagnosis  #hcsmeufr #esante #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

The Catch-22 of value-based care is that it requires patients to take a more active role in their health outcomes, which sometimes means patients resorting to looking up their symptoms on Google or WebMD.

Patient self-diagnosis is something all healthcare providers must have strategies to deal with. In an often-cited 2013 Pew Research Center report, 35% of U.S. adults say they have gone online specifically to try to figure out what medical condition they or someone else might have. Today, one in 20 Google searches are related to healthcare, according to the tech giant.

Read: 5 Strategies for Dealing With ‘Problem’ Patients

Yet, according to a 2015 study from Harvard Medical School, online resources supporting patient self-diagnosis often contain inaccurate information. Researchers entered various symptoms into multiple online symptom checkers, which ended up yielding an accurate diagnosis only 34% of the time.

Many providers’ gut reaction is to dismiss patient self-diagnosis outright, but research published in the Journal of Participatory Medicine suggests that patients who self-diagnose are also more likely to comply with provider care plans. For providers, this is an opportunity to further engage patients and achieve better health outcomes.

Here are four strategies providers can leverage to address patients who self-diagnose on the internet.

Tell Patients to Keep Searching Online

This might seem a little counter-intuitive, but providers can actually mitigate many of the problems from patients who self-diagnose by simply leaning into the issue. By encouraging them to continue searching online, you are acknowledging and validating their approach to how they manage their health outcomes. Instead of closing that window for them, leverage their desire for information by throwing it wide open.

Starting with this little bit of mental jiu-jitsu creates the ability for providers to have better success with patient self-diagnosis — allowing for better exam conversations and deeper levels of trust.

Also See: 5 Easy Ways to Boost Patient Satisfaction at Your Healthcare Practice

Provide Patients Reliable Resources

If patients are going to self-diagnose, the best thing providers can do is direct them to websites they know give credible medical information. Sites to suggest might include The Mayo Clinicthe Centers for Disease Control and Preventionthe National Institutes of Health, and the American Academy of Family Physicians. All of these sources tend to offer a nice combination of accurate medical information that is easy to read and understand. The National Library of Medicine has a full page of links on finding and evaluating health information online.

Most of these resources can be collected and linked on a medical practice’s website. Share the list with patients via email or link to specific content on social media during flu season or other times throughout the year when self-diagnosis runs high.

Create Your Own Expert Content

Research published in 2017 shows that patients trust information more when content is easy-to-read, well-organized, and comes from authors with medical credentials or other signifiers of authority.

Because of this, it stands to reason that providers should be publishing their own expert content for patients on a website where they control the design and presentation of it. Websites for doctors are notorious for being a missed opportunity for patient engagement and patient marketing strategies. But by producing your own content on a channel you own it will establish yourself as a medical thought-leader.

Publishing your own content is also effective patient marketing because it helps drive better positioning in search results, social media activity, and a better online presence and expanded network. It is the fuel that gives you and your practice the authority and credentials patients are looking for.

Check Out: Blogging 101 for Healthcare Providers

Encourage Patients to Discuss Their Research

The final thing you can do as a provider to address self-diagnosis is to encourage patients to discuss their research with you during the exam. This is your opportunity to provide compassionate care for what a patient thinks they are going through and educate them through their uncertainty and anxiety. Doing so gives you the opportunity to politely counter any research a patient has done that might be misleading, inaccurate, or comes from a questionable source.

Long-term, having these sorts of open and honest conversations will only foster more trust from self-diagnosing patients allowing them to rely more on your medical expertise and advice.

Dealing with patients who self-diagnose requires a shift in mindset. By embracing patients taking an active role in their care and creating strategies around communication, education, and patient marketing, practices can set themselves up for success regardless of what information a patient brings inside the exam room.


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Le « patient-expert » peut-il devenir un nouvel acteur de notre Système de Santé ?  #hcsmeufr #esante 

Le « patient-expert » peut-il devenir un nouvel acteur de notre Système de Santé ?  #hcsmeufr #esante  | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
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Watch the Moment When ALS Patient Who Inspired the Ice Bucket Challenge Speaks With His Voice Again

Watch the Moment When ALS Patient Who Inspired the Ice Bucket Challenge Speaks With His Voice Again | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Project Revoice is recreating the voices of ALS patients – such as Pat Quinn – so they can embrace the familiarity of their own voices, after the disease takes their vocal chords.

Via TEAM Mike Lopez Memorial Foundation |Find us on Twitter:@TEAMCUREALS
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Les maux des femmes seraient sous-estimés par les médecins #sante #hcsmeufr

Les maux des femmes seraient sous-estimés par les médecins #sante #hcsmeufr | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Théorisée par des hommes et majoritairement pratiquée par eux, la médecine moderne négligerait la santé des femmes et considérerait leurs maux comme anecdotiques ou psychosomatiques, regrette une journaliste du New York Times.

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GIE_GERS's curator insight, May 8, 2:20 PM

Théorisée par des hommes et majoritairement pratiquée par eux, la médecine moderne négligerait la santé des femmes et considérerait leurs maux comme anecdotiques ou psychosomatiques, regrette une journaliste du New York Times.

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The Empowered Patient: Myth or Reality? Transcript + stats – #digitalhealth

The Empowered Patient: Myth or Reality? Transcript + stats – #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Weds 2nd May, 10pm UK/Ire, 5pm ET Co-host Marie Ennis O’Connor aka @JBBC Transcript;    Stats;    WHO defines empowerment as “a process through which people gain greater control over decision…
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Can the healthcare industry really expect to drive patient engagement? 

Can the healthcare industry really expect to drive patient engagement?  | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Increasing patient engagement as a tool for improving care and outcomes has been a tough code to crack for the healthcare industry. This is particularly true in comparison to the consumer engagement models adopted by companies such as Facebook, Amazon, and Netflix.
 
“It's unclear whether or not we'll ever achieve comparable levels of success,” said Paul LeVine, VP for analytic services for TrialCard, speaking at the Formulary, Copay and Access Summit in San Francisco April 11-12. During his presentation, “If patient engagement is the holy grail we all seek, what does it really provide us?,” he urged the time has come to adjust expectations and design targeted, timely, and simple interventions to address the inherent barriers to patient engagement.
 
“It is not necessarily a reasonable comparison to say we should be as good as Facebook,” LeVine explained. “We are never going to get that. If we can adjust our expectations, be smart, and design the kind of targeted approaches that play to our strengths and where the patient needs it the most, we are probably going to be better off.”
 
LeVine opened his presentation with a quote from Health Affairs that defines patient engagement: “Engagement generally captures the notion that patients are involved in the process of their care — actively processing information, deciding how best to fit care into their lives, and acting on their decisions.”
 
However, there is no universally agreed upon definition of patient engagement, which may be part of the challenge facing the healthcare sector. IBM cites 22 different reasons that compel patients to engage. These include health conditions, health cost planning, accessibility and availability, medical management, and social interaction. Athenahealth offers a more streamlined perspective: “Patient engagement is active collaboration between patients and providers.”
 
There is evidence the use of portals is increasing, LeVine noted. 
 
74% of patients are able to pay their bills through portals, compared to only 56% in 2013
45% of patients scheduled appointments through portals, compared to 31% in 2013
44% of patients now refill their prescriptions through portals, compared to only 30% in 2013
63% of patients communicate with providers through portals, compared with 55% in 2014
37% of portals provide patient-generated health data, versus 14% in 2013 
 
While the portal adoption rate is increasing, it is only when one compares it to engagement statistics from consumer platforms such as Facebook, Netflix, and Amazon that the disparity becomes clear. For example:
 
67% of Facebook users check the social media platform at least once daily (Statista, 2017)
23% of Netflix users stream something every day (Leichtman, 2017)
35% of Amazon Prime users shop on the site every week (Walker Sands, 2016)
 
“Those are some real engagement numbers,” said LeVine. “There are major issues to explore there.”
 
Patient versus consumer engagement

 

Patient engagement differs significantly from consumer engagement. One dilemma facing the healthcare industry is that patients' engagement is episodic by nature, noted LeVine. The consulting firm Deloitte identifies this in its 2015 consumer engagement report: Patients newly diagnosed are ravenous about finding out information about their condition, but that interest tails off once they are better educated. Similarly, functions such as choosing a PCP or a health plan – typical measures of engagement – are usually sporadic, rather than consistent ones.    
 
There are other hurdles to strong patient engagement, too. “Patients don't necessarily want to be reminded about their health condition. A lot of people want to push it away for a while and not be engaged,” explained LeVine.
 
Also, healthcare providers and payers have to be mindful of the unintentional impediments they put in the way of engaging with patients. LeVine cited a case in which a woman was listed as a having a high-risk pregnancy. She became “the designated high-risk pregnancy lady,” and every time she checked her portal those are the first words she would see. This type of labeling can be a strong deterrent to an individual's engagement with a payer's or provider's portal. 
 
The overarching question LeVine posed is, “Should we hold patient engagement to the same standard we use for consumer engagement?”
 
Despite some interesting outliers, there's generally strong support for promoting engagement. According to Health Affairs, patient engagement is one strategy to achieve the "triple aim" of improved health outcomes, better patient care, and lower costs.
 
In a study conducted by Judith Hibbard at the University of Oregon, patients with the lowest activation scores — those who had few skills and the lowest rate of confidence in actively engaging in their own care — incurred costs of up to 21% higher than patients with the highest activation levels.
 
“Given its inherent limitations, what would we consider ideal attributes of a ‘patient engagement' intervention?” LeVine asked.
 
He described a case study that looked into the inadequate use of co-pay cards and adherence. Conducted in 2016, the program used email and telephone interventions to re-engage diabetes patients. Using its QuickPath information platform, which connects HCPs, pharmacists, and payers with the patient through a variety of means, including smartphones, wearables, text, EHRs, and eWallet platforms, TrialCard was able to significantly improve the percentage of patients activating and using a co-pay card, from 19% to 34.5%.
 
Yet despite those improvements, LeVine believes more can be done. “We're still not reaching enough patients because our methods aren't fully aligned with the reasons for their lack of engagement,” he explained.
 
So how can payers and providers promote higher levels of activation from patients? LeVine pointed to the model used by the entertainment industry. For example, Netflix, he noted, has been highly successful in identifying consumer preferences and behavior through analytics. In fact, more than 80% of the movies and TV shows users watch on Netflix are discovered through the platform's recommendation system, LeVine said, citing an article from Wired
 
Netflix is not alone in using sophisticated analytics to improve engagement. According to McKinsey & Co., 35% of Amazon's revenue is generated by its recommendation engine.
 
“We need to get better behavioral analytics,” LeVine said. “These are the key models for understanding what motivates patients to act. We have to get a whole lot better at using some of those learning models (patient activation model, transtheoretical model, motivational interviewing, and others) as ways of improving that type of engagement.”
 
“The healthcare industry,” stressed LeVine, “is considerably less advanced in deploying these types of behavioral analytic strategies than the consumer sector – but that doesn't mean we don't know a lot about what motivates patient behavior. We just have more we need to learn.”

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Etats généraux de la bioéthique : fin de la consultation citoyenne  #hcsmeufr #esante 

Etats généraux de la bioéthique : fin de la consultation citoyenne  #hcsmeufr #esante  | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Paris, le mercredi 2 mai 2018 – La consultation citoyenne, première étape des Etats généraux de la bioéthique, ouverte il y a trois mois, vient de s’achever.
Neuf thèmes avaient été retenus pour animer les discussions, des cellules souches à l'intelligence artificielle en passant par les [...]
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Quand le malade devient un expert de la santé  #hcsmeufr #esante 

Quand le malade devient un expert de la santé  #hcsmeufr #esante  | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

Depuis bientôt 10 ans, une université parisienne diplôme des patients. Le but ? Faire du vécu de la maladie une expertise. Pour mieux écouter le malade et épauler le soignant.

 

« Écrivez les mots éléphant rose avec votre bassin, allez, on se déverrouille… Puis faites l’huître avec votre visage… »

En ce frais matin parisien, la vingtaine d’élèves de Laurence Bouffette fait sa « gym du cerveau », zygomatiques en forme. Sourire pour mieux réfléchir et entamer une journée de cours où les neurones risquent de chauffer.

La formatrice lance le premier atelier de ce module en éducation thérapeutique. Dans la salle de cours de la fac Pierre et Marie Curie-Sorbonne universités, les cahiers sont de sortie. « C’est un peu le retour à l’école, s’amuse-t-elle. L’enjeu est de passer un diplôme. Les participants se retrouvent depuis octobre, deux jours par mois. La soutenance, c’est en juin. Alors, même si on semble détendus, c’est du sérieux ! »

Ce qui fait mal…
Rien ne distingue les malades des soignants. « Le principe de l’université des patients, c’est de mélanger tout le monde pour apprendre à travailler ensemble. »

Faire d’une pathologie une expertise, transformer ce qui fait mal en une action qui fait du bien, associer le savoir académique au ressenti empirique, c’est ce qui a séduit Sophie, 40 ans. 

Cette prof de français, atteinte depuis l'enfance d'une pathologie pulmonaire, veut changer le rapport à la maladie: « Quand vous devez la vie à vos médecins, cela crée un lien de soumission où seule la parole venue du haut et du savoir comptent. Il faut changer cette vision verticale de la médecine. Permettre au patient d'être davantage acteur. »

Une richesse humaine
L'intégration de patients-experts dans des équipes médicales, des associations de soutien aux malades, à l'hôpital ou dans des réseaux de santé, « c'est une richesse humaine complémentaire dans le parcours de soins. À notre tour, on apporte quelque chose aux autres plutôt que d'être seulement dans l'attente de soins. »

Depuis la création de cette université en 2009, 123 patients ont été diplômés et 300 acteurs de santé formés à leurs côtés (universitedespatients.org). Si le statut de patient-partenaire est déjà très reconnu en Angleterre, Belgique, Suisse ou au Canada, l'accueil reste timide en France. Seuls 10% des patients diplômés ont réussi à trouver un emploi salarié correspondant à cette formation, beaucoup interviennent bénévolement.

Aux côtés de Sophie, tous partagent l'idée de briser-ou au moins fissurer-cette paroi de verre qui bannit trop souvent l'empathie et l'émotion. Maëlle, infirmière et étudiante du cursus, résume : « On nous reproche cette distance qui peut blesser. Apprendre à mieux écouter le patient, c'est rééquilibrer la force et le pouvoir de chacun, utiliser autant la technique que le relationnel. Et mieux appréhender les émotions. »


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Excessive Online Support Can Be Harmful to HIV Patients  #hcsmeufr #esante #digitalhealth

Excessive Online Support Can Be Harmful to HIV Patients  #hcsmeufr #esante #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

From the beginning of the internet era, both HIV-positive people and heath care providers alike have sought medical information online. Over the course of the HIV epidemic, web-based platforms have grown in numbers and sophistication. However, because anyone can post virtually anything on the internet, it is necessary to employ both caution and critical thinking when attempting to self-diagnose a medical condition or to evaluate health care information, including implausible cures.

The internet has also provided a platform for online support groups, not just for HIV but for a variety of conditions, which have become prominent patient resources. Such web-based connections are valuable both for those individuals in remote or rural locations and for persons with highly stigmatized conditions such as HIV, who may be reluctant to reveal their status in person to others. It is often the very patients who are most stigmatized who have limited resources, live in isolation, and seek support from online health communities. There is no doubt that such online support groups have provided much-needed assistance, but is there a point at which the benefit of such groups peaks or even begins to diminish? A new study from the University of Buffalo School of Management indicates that too much online support can actually be deleterious to self-care behavior.

 

Study Concept

Despite the fact that participating individuals may not have met in person, online support groups benefit greatly from the willingness of their members to share their personal experiences of managing their illness. Such intimate stories add an emotional depth, a positive mood, and even inspiration to these interactions. Nevertheless, until this study, the impact of online support on actually improving HIV patient self-care behavior had not been specifically evaluated.


Related: The Company You Keep: Do Social Networks Influence HIV Status?

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The investigators began this evaluation with several specific approaches, the first of which postulated that a good mood and happiness expressed in online support groups may not necessarily translate into improved self-care (defined as the range of activities individuals undertake to enhance health, prevent disease, evaluate symptoms, and restore health).

They also identified sub-dimensions of "social support" to better capture subtle variations, by defining two major types of support: 1) informational support (including both objective information such as facts and statistics) along with experiential information (such as the actual experiences, insights, and strategies of other patients) and 2) emotional support consisting of an emotional tone (the intent to cheer or provide comfort) and community involvement (the extent to which online community members participate in conversation threads).

The authors predicted that with low levels of objective information (facts about HIV), patients would have limited understanding of their disease but that with increasing support they would become better informed and engage in greater levels of self-care behavior. However, beyond a certain threshold, the result could be information overload, resulting in stress for the patient and an actual decline in self-care. Additionally, the authors speculated that emotional support could inspire patients who see that others are successfully coping with HIV, thereby providing assurance and reinforcement. Yet, beyond a certain threshold of emotional input and feedback, those seeking support would begin to perceive an excessive emotional tone as "forced optimism," which might lead them to use negative coping strategies, such as denial and disengagement from self-care.

 

Methodology

The investigators analyzed over 30,000 conversational threads from five POZ forums with dates ranging from May 2006 to March 2017. These threads represented nearly 16,000 unique users and 330,000 posts. Text mining and linguistic analysis were utilized to develop libraries and self-generated dictionaries to measure both the emotional support and information the posts provided, including those resulting from objective sources and personal experience, as well as the level of self-care patients expressed in response. Sample threads were manually reviewed and coded by three different HIV experts to validate the measure of the dependent variable (self-care behavior). These results were further analyzed using regression models to identify relationships among the variables.

 

Findings

The authors did indeed find that, beyond a threshold, both informational and emotional online social support had an adverse impact on the self-care behavior of HIV patients. The results suggest that caution should be exercised in the use of online health community interventions for HIV patients, and perhaps for patients with other stigmatized chronic diseases, as well. The authors found an inverse-U relationship between both objective information and emotional tone impacting self-care behavior. That is, beyond a certain threshold, there are diminishing returns for such online support groups. Caution must therefore be exercised when using social media to provide objective information for HIV patients (and patients with other stigmatized conditions), as too much can be overwhelming, causing patients to give up on reading material that is essential for understanding and implementing appropriate health behaviors.

The authors also found that, to a point, higher levels of experiential information and community involvement were positively related to self-care behavior. The higher the level of experiential information provided by online community members who respond to an individual member, the more likely that member would engage in self-care behavior. Additionally, the higher the involvement of online community members who respond to an individual member, the more likely they would engage in self-care behavior. Yet, despite these positive influences on self-care behavior, there is a point beyond which excessive emotional and informational support can not only reduce levels of self-care behavior but actually reinforce negative coping mechanisms, such as denial and disengagement from self-care.

The authors plan to replicate this research for other highly stigmatized conditions. For those living with HIV, this study illuminates an important note of caution with online support groups. As noted, such virtual communities create life-saving connections for a broad array of individuals, but beyond a certain threshold, excessive emotional support or objective information can actually be deleterious to a person's level of self-care. This is important both for persons living with HIV and medical providers as we continue to develop self-care strategies that utilize technology but that also recognize the limits of patients' abilities to optimally integrate this support into their own management of HIV.

David Fawcett, Ph.D., LCSW, is a substance abuse expert, certified sex therapist and clinical hypnotherapist in private practice in Ft. Lauderdale, Florida. He is the author of Lust, Men and Meth: A Gay Man's Guide to Sex and Recovery.


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La voix des patients, salut de l’hôpital ? #hcsmeufr #esante

La voix des patients, salut de l’hôpital ? #hcsmeufr #esante | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
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Clarifying the roles of patients in research #hcsmeufr #esante #digitalhealth #hcsmeu

Clarifying the roles of patients in research #hcsmeufr #esante #digitalhealth #hcsmeu | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
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Témoignage : #MonKombat

Témoignage : #MonKombat | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
  Je suis Juliette, 37 ans, Maman d’une petite fille de 22 mois.   J’apprends le 14 juin 2016, alors que je suis enceinte de 8 mois, que j’ai un cancer du sein, HER 2+++, en grade 2, stade 2. J’accouche le 17 juin 2016, ma motivation pour le combat et la lutte vient de naître. …

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Faire de l’expérience de la maladie son métier #hcsmeufr #esante #moipatient

Faire de l’expérience de la maladie son métier #hcsmeufr #esante #moipatient | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

"Épreuve douloureuse, la maladie peut devenir l’occasion de se reconvertir dans l’éducation thérapeutique. Des diplômes universitaires existent pour les patients et les soignants qui veulent se tourner vers ces nouveaux métiers."

"Des cours peu ordinaires se déroulent au troisième étage d’un bâtiment de l’hôpital de la Pitié-Salpêtrière, à Paris, dans le cadre de la faculté de médecine Pierre-et-Marie-Curie (Sorbonne Université). Au programme de cette matinée de mars : « techniques de préservation de la fertilité après un cancer », « prise en charge de la douleur », « sexualité et cancer ».
Les 26 étudiants – jamais avares de questions, de remarques ou de plaisanteries devant les intervenants spécialisés – ne sont ni des internes ni des soignants, à l’exception d’un médecin : ce sont des patients, toujours en traitement ou en rémission d’un cancer. Leur âge varie entre la trentaine et la soixantaine. Venus d’horizons professionnels divers, ils se forment à l’écoute active, au partage de l’expérience de leur maladie et de leurs traitements, en vue d’agir en tant qu’intermédiaires entre le corps médical et les malades, notamment. Ils suivent le cursus d’un diplôme universitaire (DU) pour exercer, à temps plein ou partiel, de nouveaux métiers : « patient expert », « patient partenaire » ou « patient enseignant ».

Accompagner les salariés malades

Sandrine Doczekalski, 38 ans, était styliste chez Sonia Rykiel lorsqu’on lui a diagnostiqué un lymphome de Hodgkin, une forme de cancer du système lymphatique. « J’ai abandonné mon métier pour me soigner et parce que toutes mes priorités ont été remises en question », dit-elle. Elle s’est formée en sophrologie et entend aller plus loin dans l’aide aux autres. Carole David, 47 ans, guérie d’un cancer du sein, a repris son ancien travail chez Axa, mais voudrait créer, au sein de son entreprise, une unité pour accompagner les salariés souffrant d’un cancer ou d’une autre pathologie lourde. Naïma Françoise, 53 ans, doit suivre un traitement de chimiothérapie à vie. Juriste dans un cabinet de consultants, elle s’est arrêtée de travailler neuf mois. « Je veux faire quelque chose des épreuves que je continue de vivre, dit-elle. Je sais qu’il y a des gens qui souffrent de maladies chroniques et qui ne peuvent pas ou n’osent pas en parler. »

Ce groupe, féminin en grande majorité, prépare un DU intitulé « accompagnant de parcours du patient en cancérologie ». Il a été créé en 2016, en même temps que celui dénommé « démocratie en santé ». Ce dernier est destiné à former les responsables des nombreuses associations de patients qui ont vu le jour, afin qu’ils représentent les usagers dans la gouvernance des hôpitaux ou dans les instances nationales et régionales de santé, comme le prévoit la loi de 2016. Destiné au départ aux seuls soignants, le DU en éducation thérapeutique, le plus ancien et le plus général, a peu à peu intégré des patients. Pour ceux qui veulent poursuivre leurs études après un DU, un master est proposé, ainsi qu’un doctorat.

« Nous avons été la première université au monde à délivrer ces diplômes à des patients », souligne Catherine Tourette-Turgis, l’enseignante-chercheuse qui, avec la foi du charbonnier, a fondé en 2009 la première université de patients de France, au sein de la faculté de médecine Pierre-et-Marie-Curie, à Paris. Elle a fait des émules : l’université de Grenoble-Alpes propose un DU en éducation thérapeutique, et celle d’Aix-Marseille, un certificat universitaire.

La fin de la passivité du malade

Le concept de patient expert, né en Californie de la douloureuse expérience des malades du sida avant les trithérapies, auprès desquels Mme Tourette-Turgis a travaillé, a essaimé au Canada, au Royaume-Uni, en Belgique et en Suisse notamment, sans qu’il soit question de diplôme. De nombreuses associations de patients proposent aussi des formations – non diplômantes – en éducation thérapeutique, à Paris et en régions. Mais, en France, la caution universitaire confère souvent davantage de légitimité. « Depuis que les progrès médicaux ont transformé la plupart des maladies mortelles en maladies chroniques et que l’avènement d’Internet a vu se multiplier sites de patients, blogs et forums, les malades deviennent des experts qui en savent presque autant que leur médecin », argumente sur son blog la professeure fondatrice de l’Université des patients.

L’évolution du monde médical dans les pays occidentaux, qui ont tous pris un tournant ambulatoire, accentue le besoin d’intermédiaires, à l’heure où les malades ont cessé d’être passifs devant les mandarins. Parallèlement, les restrictions financières imposées aux hôpitaux mettent de plus en plus leur personnel sous pression (voir Le Monde du 17 mars). « C’est le syndrome de la main sur la poignée de porte – signe que la consultation est terminée même si le patient n’a pas tout compris et se pose d’autres questions », résume d’un trait Isabelle Lecocq, animatrice-pédagogue dans plusieurs DU de l’Université des patients.

Grâce aux progrès de la médecine, « le nombre de patients chroniques est passé en France de 5 millions dans les années 2000 à quelque 20 millions actuellement. Or, l’hôpital a été conçu pour soigner les maladies aiguës, pas pour prendre en charge les maladies chroniques », observe Catherine Tourette-Turgis.

Lire aussi :   Catherine Tourette-Turgis : « Le patient en tant qu’humain et cosoignant est complètement nié »

Emploi salarié
Jusqu’à présent, 123 patients ont été diplômés (niveau DU ou master) à l’Université des patients de Paris, dont 10 % ont trouvé un emploi salarié (coordonnateur de programmes à l’hôpital, médiateur en santé, formateur, etc.). Atteinte de la maladie de Crohn et d’une spondylarthrite ankylosante, Corine Devos, 53 ans, dit avoir « souffert pendant sept ans de n’avoir pas été associée aux décisions médicales [la] concernant ». Dans un premier temps, la future patiente experte a « rebondi dans le bénévolat, l’animation d’ateliers et les interventions dans les hôpitaux en tant que patient partenaire ». Finalement, sa maladie et son DU lui ont « offert l’opportunité de développer des compétences que je n’aurais jamais cru acquérir ».

A l’issue d’une chimiothérapie lourde, Guillaume Lionet, 47 ans, n’a jamais repris son job de chasseur de têtes dans la finance. « Pour donner un sens à ce que j’avais vécu, j’ai d’abord fondé l’association Fight Club Cancer, afin d’offrir ce qui m’a manqué : un accompagnement mental et social, dans un cadre où chacun puisse parler de sa situation sans tabou », raconte-t-il. Avec d’anciens patients, il a créé début 2017 la société de conseil K-Consulting. Elle propose aux employeurs un accompagnement individuel ou collectif du salarié, pendant ses traitements et au moment du retour au travail.

La faculté de médecine de l’université Paris-XIII de Bobigny (Seine-Saint-Denis) réalise, quant à elle, une autre première française en employant, depuis janvier 2016, des patients experts rémunérés comme vacataires. Ils assurent, en binôme avec des enseignants médecins, la formation des internes en médecine générale et participent à leur évaluation. « Ce qui était au départ une expérimentation est devenu programme. Et nous allons l’étendre au niveau du deuxième cycle », indique Olivia Gross, docteure en santé publique et chercheuse au laboratoire d’Educations et pratiques de santé de Paris-XIII. Marie Citrini, patiente enseignante, suit le même groupe d’internes depuis trois ans. « Ils n’ont plus peur de nous et mesurent, à partir des cas pratiques qui leur ont posé problème en stage, ce qu’on peut leur apporter », commente-t-elle.

« L’intégration du patient dans le système de santé est devenue indispensable », conclut Catherine Tourette-Turgis. Pour la renforcer, la professeure a pour projet de créer d’autres diplômes universitaires, dont un sur la relation parents-enfants malades."

Se former :
Les DU de la faculté de médecine Pierre-et-Marie-Curie (Paris) Durée : 120 heures en 7 sessions de 2 jours + e-tutorat. Conditions d’admission : niveau bac + 2, lettre de motivation, entretiens. Coût : 689 euros. Possibilité de bourses.

Le DU de l’université Grenoble-Alpes.

Durée : 104 heures en 7 sessions de 2 jours + tutorat. Conditions d’admission : lettre de motivation. Coût : 928 euros

Le certificat de l’université Aix-Marseille.

Durée : 1 an + 5 sessions de deux jours et un stage pratique. Conditions d’admission : « toute personne ayant une maladie chronique ». Coût : 105 euros


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Putting Humans at the Center of Health Care Innovation #hcsmeufr #esante #digitalhealth

Putting Humans at the Center of Health Care Innovation #hcsmeufr #esante #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Best practices from three leading institutions.

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Art Jones's curator insight, April 24, 3:18 PM

Human Centered Design

&

Collaborating to Co-Create Solutions

 

Excerpt: An alternative emerging at healthcare institutions worldwide is human-centered design and co-creation, a set of approaches that can accelerate and humanize healthcare innovation. This model isn’t just about getting greater patient feedback during the innovation process. Patients are co-designers, co-developers, and increasingly more responsible for their own and collective health outcomes.

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Online Education Improves Adherence in Young Patients With Lupus #hcsmeufr #esante #digitalhealth

Online Education Improves Adherence in Young Patients With Lupus #hcsmeufr #esante #digitalhealth | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

Key points
• It is feasible to create educational online content that may help young people manage their lupus.

• Online lupus education improved hydroxychloroquine adherence in adolescents and young adults.

• The addition of social media support further increased adherence in this population.

Background
Difficulties that adult patients have in coping with and managing systemic lupus erythematosus (SLE) are compounded in young adults and adolescents, who are less prepared for the burden. Self-management is crucial to medication adherence, which in turn is crucial to disease control in lupus.

Scalzi and colleagues at Pennsylvania State University in Hershey point out that where SLE education is concerned, little is known about how to target adolescents, an age group with a complex set of emotional and developmental needs.1

Widespread use of social media and technology in general by young adults and adolescents may represent an effective means of empowering those with SLE to take self-management seriously—in addition to providing them with a resource to learn about their disease.

The authors examined the feasibility of recruitment for a trial that looked at the effect of participation in an online educational website for adolescents and young adults with SLE. They compared participation levels in subjects with and without social media inclusion. Recently, they presented their findings in Pediatric Rheumatology.

The study
The authors created a publicly available website (www.facinglupustogether.com), which contains educational content about lupus. Twenty-seven subjects with SLE between the ages of 13 and 23 years completed the study. The subjects visited the website and completed educational modules.

Feasibility outcomes included recruitment, compliance, and dropout proportions. The secondary outcome was adherence to prescribed hydroxychloroquine.

The results
• 26% of the controls and 28% of the social media subjects were lost to follow-up because they did not complete all of the online questionnaires at T0 and/or T1.

• No statistical difference was found between the control and social media groups with regard to dropout (P = .8).

• 86% of subjects completed the first set of surveys, and 73% completed both sets.

• The percentage of all subjects “adherent” to prescribed hydroxychloroquine (those with a medication possession ratio of ≥ 0.8, or 80%) improved from 54% to 79% (P = .07).

• Sense of agency and sense of community improved significantly in subjects in the social media group.

 

Implications for clinicians
• Make use of every tool you can to reach patients with SLE—particularly young people, who have not yet developed good self-management skills.

• For better or worse, social media and the Internet are a large part of young people’s lives and as such are a way to reach them.

• Following your young SLE patients through social media and supplying them with an online community where they can receive knowledge and support may improve treatment adherence and ultimately quality of life.

Disclosures: 

The Lupus Foundation of America and the Children’s Miracle Network provided funding for the project.


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LA LITTERATIE EN SANTE, TOUS CONCERNES

LA LITTERATIE EN SANTE, TOUS CONCERNES | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
PROMOUVOIR ENSEMBLE LA LITTERATIE EN SANTE
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Technologies, Internet : Apprendre à rendre le web accessible aux séniors #hcsmeufr #esante 

Technologies, Internet : Apprendre à rendre le web accessible aux séniors #hcsmeufr #esante  | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

Forum à Rennes, bus numérique en Gironde, conférence à Paris, passeport numérique dédié à Issy-les-Moulineaux

Un peu partout en France, les personnes âgées qui s’intéressent aux nouvelles technologies trouveront un service, un atelier, un cours qui leur est destiné.
Les technologies peuvent aussi rapprocher les générations qui s'entraident souligne le Pari solidaire.
On peut aussi se rendre dans un des 4500 Espaces publics numériques (EPN) à découvrir partout en France, pour se familiariser à Internet (et remplir ces déclarations en ligne) ou devenir expert.
Sans oublier "Emmaüs-Connect" présent dans huit grandes villes aujourd'hui, qui donne un bagage informatique à toute personne en situation de précarité numérique, quel que soit son âge ...


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France Silver Eco's curator insight, April 17, 2:49 AM

A l'occasion du Salon des Seniors, l’Observatoire de l’âge (*) estime que 55% des seniors utilisent régulièrement un ordinateur et 42% ont confiance dans la télémédecine. Compagnons, moyens de communication avec les proches, sources d'informations, de jeux... A l'heure où les services publics ne sont de plus en plus accessibles qu'en ligne, les initiatives se déploient pour lutter contre la fracture numérique.

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The Difference Between Patient Education and Health Literacy  #hcsmeufr #esante #digitalhealth #hcsmeu

The Difference Between Patient Education and Health Literacy  #hcsmeufr #esante #digitalhealth #hcsmeu | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
June 13, 2017 - Patient education and health literacy are two key concepts in patient engagement and chronic care management. Healthcare experts strive to improve patient health knowledge, asserting that knowledgeable patients are more engaged in shared decision-making and self-management.

Because patient education and health literacy are so closely related, their overlapping definitions begin to blend together. In reality, patient education and health literacy are two separate sides of the same coin and require a thorough understanding from clinicians.

Healthcare professionals must understand the differences between the two and the ways in which these two concepts relate to fully deliver meaningful patient education that drives health literacy.

Using patient education to drive patient care

Patient education is the practice of informing patients about their health, wellness, treatment plans, potential outcomes, and other information critical to the patient experience.

READ MORE: Patient Education Reduces Costs, Boosts Asthma Outcomes

The goal of patient education is to instill a sense of autonomy in the patient and to equip her with the knowledge necessary to make her own healthcare decisions.

As a result, healthcare experts have hailed patient education as a critical aspect of shared decision-making and chronic care management.

Patients who fully understand their current wellness levels, their treatment options, and the potential consequences of each treatment option are well-prepared to offer input into how to carry onward with their care, said Peter Goldbach, MD, in a past interview with PatientEngagementHIT.com.

“Sometimes what gets lost is the fact that the patient you’re working with may not really understand their condition,” said Goldbach, who is Chief Medical Officer of patient education company Health Dialog. “It’s very confusing to be a patient and it takes the provider a while to arrive at a diagnosis. But eventually providers need to share that diagnosis with the patient, let them understand it, and have a chance to let it sink in.”

Research shows that patient education efforts can help increase the occurrence of shared decision-making. One tool from the University of California San Francisco (UCSF), called PREPARE For Your Care, explained complicated health concepts in plain language. This increased the frequency of shared decision-making by 35 percent.

READ MORE: How Does Patient Health Literacy Affect Digital Health Use?

Healthcare professionals must determine the best patient education strategies for their specific populations. Many industry experts laud the patient teach back method during which providers explain a concept to patients and ask patients to explain the concept in return.

If patients can successfully and clearly communicate a piece of information using their own words, providers can conclude that patients understand the concept. Patients who repeat information in their own words tend to absorb information faster than patients who just listen.

Other healthcare professionals rely on patient data access to help improve patient education. A recent OpenNotes study showed that patients who can view clinician notes and offer feedback can better participate in their own health. OpenNotes also helped improve patient safety.

Clinicians can also tap into external resources to help deliver patient education. According to MedlinePlus, a part of the National Institute of Health and National Library of Medicine, healthcare professionals can use pamphlets, printouts, videos, models, props, podcasts, charts, or peer groups to improve patient education.

Providers should employ each tactic based upon a patient’s personal preferences.

READ MORE: The 3 Building Blocks Supporting Patient Engagement Strategies

Patient education helps improve health literacy

The CDC defines health literacy as “the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions.”

In essence, health literacy is the end goal to strong patient education. Providers who successfully educate their patients will help patients better understand their own health, allowing patients to interact with the healthcare industry in the following ways:

Find information and services
Communicate their needs and preferences and respond to information and services
Process the meaning and usefulness of the information and services
Understand the choices, consequences and context of the information and services
Decide which information and services match their needs and preferences so they can act
Digital health literacy is closely related to health literacy and refers to a patient’s ability to use health technology to interact with their own health and the healthcare system at large. Digital health literacy may impact a patient’s ability to obtain and use the patient portal and EHR, for example.

Healthcare professionals have yet to develop a gold standard for assessing patient health literacy levels, although the need is increasingly pressing. As healthcare becomes more patient-centered, providers will need to know how much education patients need to fully empower and engage patients.

Some industry experts have developed upcoming patient health literacy assessments. University at Albany researcher Jennifer Manganello, PhD, MPH, has created one tool that can assess teen health literacy in under 30 seconds.

Patients view a list of 10 health-related words in 30 seconds and read them out loud. Clinicians assign a score based on how the patient pronounced the word, according to Manganello, who is also an associate professor in the Health Policy, Management & Behavior department at the University at Albany.

“Although this tool does not fully measure all concepts related to health literacy, such as getting health information and thinking critically about it, it does provide a simple way to identify those teens who may require more support to understand health information,” Manganello explained.

Research published in the Journal of Medical Internet Research suggested that patients who use the internet more frequently also have higher health literacy. The research team recommended that clinicians ask patients about their internet usage to help predict their patient education needs.

A separate study also published in JMIR indicated that patients who manage a chronic condition, have more experience with the healthcare industry, and who have higher educational attainment tend to have higher health literacy.

However, clinicians should note that chronic care management patients likely accumulate this health literacy through years of industry involvement and patient education from their providers.

It’s not likely there will ever be a one-size-fits-all guide to identifying a patient with high health literacy. As a result, clinicians must integrate strong patient education strategies into all of their patient engagement efforts.

Healthcare providers can improve patient activation and ultimately drive person-centered care by offering all patients the chance to improve their health literacy.

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What Consumer Characteristics Predict High Health Literacy?  #hcsmeufr #esante #digitalhealth #hcsmeu

What Consumer Characteristics Predict High Health Literacy?  #hcsmeufr #esante #digitalhealth #hcsmeu | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

June 10, 2016 - Patients who manage chronic illnesses, have more experience with the healthcare industry, and higher education levels tend to have higher health literacy, says a recent article in the Journal of Medical Internet Research.

Lead researcher Mary Zide, MLIS, PhD, along with her research team, sought to examine patterns in health literacy administering a crowd-sourced survey. The survey, which garnered 500 responses, specifically focused on patient health literacy with regard to managing lung cancer.

The survey showed that patients managing chronic illnesses tended to be more health literate and better understand healthcare terminology.

However, chronic illness status was not the only predictor of better health literacy. Characteristics such as education level, time spent online, income, smoking habit, sex, and patient portal use habits also predicted health literacy.

Characteristics such as time spent online and education level may have resulted in higher health literacy because of better general health knowledge, Zide and colleagues posited.

READ MORE: How Social Media Can Improve Public Health, Patient Education

Interestingly, the research team also suggested that some of these characteristics may have overlapped to create patients with higher health literacy. The survey showed that patients with higher levels of educational attainment were also more likely to be managing a chronic illness.

A patient’s knowledge of their own illness, combined with their general knowledge produced by their education level, may have created a patient with higher health literacy.

“In our work, it may be that the higher performance we observed relates to higher levels of educational attainment, as those respondents reporting chronic illness in our survey more frequently had Associate, Bachelor’s, and Master’s degrees than those reporting no chronic illness (14.6% vs 12.9%, 39.8% vs 36.8%, and 9.7% vs 8.8% respectively),” Zide and colleagues said.

The researchers also focused on perceptions of patient portals, adding survey questions regarding patient satisfaction with the technology.

Patients with chronic illnesses tended to have better perceptions of patient portals, potentially because patients managing a chronic illness may spend more time using a portal, and therefore are more familiar with the technology.

READ MORE: Can Online Articles Improve Patient Education, Engagement?

Females were also more likely to view the patient portal more favorably, specifically with regard to usability. On a Likert scale question asking respondents to rate portals’ ease of use, females averaged a score of 5.32 out of ten versus males’ 4.97 out of ten.

This trend, too, could be credited to more frequent use of the patient portal.

“While use does not equal preference, positive ratings may be influenced by the higher use of portals we observed in this survey (19.7% of women had used a portal over ten times, compared to 14.3% of men), which is consistent with higher eHealth resource use observed in women,” Zide and the research team explained.

Although the survey showed that chronically ill patients viewed the portal better than their peers, it showed one significant commonality between the two: one third of patients are put off from patient portals due to security concerns.

Zide and colleagues noted that these security concerns may be a significant barrier to patient portal adoption because they directly affect patient satisfaction.

READ MORE: Internet Familiarity Tied to Patient Digital Health Literacy

“Security has also been a concern,” the researchers said. “This common theme suggests that eHealth users may associate eHealth tools with a lack of security. This concern has the potential to impact portal use, as it would likely limit satisfaction and perceived usability and, thus, feasibility.”

Patient portal security concerns are a common issue, as the researchers noted. However, leading healthcare organizations have made efforts to ensure that these tools be secure.

The Office of the National Coordinator for Health Information Technology (ONC) has released information regarding the technical safeguards necessary for protecting patient portal data:

To make sure that your private health information is safe from unauthorized access, patient portals are hosted on a secure connection and accessed via an encrypted, password-protected logon.
EHRs also have an “audit trail” feature that keeps a record of who access your information, what changes were made, and when.


Although patient portals use safeguards, there are other safety tips you should follow when accessing the patient portal. Always remember to protect your username and password from others and make sure to only log on to the patient portal from a personal computer or secure computer.


The Department of Health and Human Services has also made clear HIPAA guidelines regarding patient portals. These guidelines spell out who and who is not allowed to access EHR-tethered health data.

Although HIPAA is a set of guidelines, rather than some sort of physical protector of health data, these provisions act as a legal standard that guides health data into the correct hands.


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New Tool Assesses Teen Patient Health Literacy in 30 Seconds  #hcsmeufr #esante #digitalhealth #hcsmeu

New Tool Assesses Teen Patient Health Literacy in 30 Seconds  #hcsmeufr #esante #digitalhealth #hcsmeu | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

"May 08, 2017 - Pediatric clinicians can now assess adolescent patient health literacy in under 30 seconds using a new tool developed by researchers from the University at Albany.

Created by Jennifer Manganello, PhD, MPH, the tool addresses a knowledge gap about health literacy in pediatric and adolescent healthcare. Although it is common knowledge amongst most clinicians that teenagers are largely unable to understand their own health, diagnoses, and other critical information, there is little headway on a solution.

“Numerous studies have indicated low health literacy is linked to negative health outcomes in adults. However, limited research has been done on adolescents,” Manganello said in a press release. “[The tool] offers researchers and clinicians a brief screening tool that can be used to quickly assess adolescent health literacy in a variety of settings."​

 

“There is much less research on teens than on adults, which is one of the reasons why this tool is so important,” Manganello continued in email correspondence with PatientEngagementHIT.com. “However, with the limited research we have, it appears that low health literacy is related to outcomes such as poor asthma management and limited understanding of how to use products containing acetaminophen.”

 

Manganello, who is an associate professor in the Health Policy, Management & Behavior department at the University at Albany, created Rapid Estimate of Adolescent Literacy in Medicine, shortened to REALM-TeenS.

 

READ MORE: Five Best Practices for Improving Patient Health Literacy

 

REALM-TeenS is a condensed version of another health literacy assessment, REALM-Teen. The fundamental difference is the time needed to complete either assessment.

Developed in 2006 by Terry Davis of the Louisiana State University Health Sciences Center, REALM-Teen asks patients to read out loud a list of 66 health-related words within three minutes. REALM-TeenS shortens that list to 10 health-related words in 30 seconds.

 

Tested words include terms such as “diabetes,” “asthma,” “exercise,” and “bronchial.”

 

Both assessments look at how many words adolescent patients can pronounce correctly within the allotted timeframe. If the patient struggles to pronounce several words, it is likely she is unfamiliar with it and needs more education in that area, Manganello reasoned.

 

“Although this tool does not fully measure all concepts related to health literacy, such as getting health information and thinking critically about it, it does provide a simple way to identify those teens who may require more support to understand health information,” Manganello explained.

 

READ MORE: How Digital, Health Literacy Drives mHealth Patient Engagement

 

REALM-TeenS is nearly as accurate as its more extensive predecessor, Manganello said. She compared past research about REALM-Teen with results using her own tool and found that REALM-TeenS was 92 percent as successful as the long-form counterpart.

 

Knowing that the quicker tool is nearly as effective as the more extensive assessments is key, Manganello said. Not a lot of clinicians actually test for patient health literacy because assessments can take too long or get in the way of other appointment priorities.

 

“We understand that researchers and health professionals often have a very limited amount of time to ask questions and collect their information,” Manganello acknowledged. “Our new tool makes it easier. Identifying low health literacy in adolescents can be useful for tailoring important health information, medication instructions, and follow-up support.”

 

Additionally, this tool is more conducive to assessing overall patterns in teen health literacy.

 

“Current recommendations suggest that health providers use 'universal precautions' to make information easy to understand for all patients as opposed to screening individual patients,” Manganello noted. “However, this tool will be useful for those who want to look at overall rates of low health literacy for adolescents in a practice or find out how low health literacy relates to certain health conditions or behaviors.”

 

READ MORE: How Hospitals Can Raise Patient Satisfaction, CAHPS Scores

 

It’s important to diagnose teen health literacy so clinicians can improve patient understanding but also so clinicians can make health information more navigable and easy to comprehend.

 

Perhaps the issue is not that patients lack the ability to understand health concepts, Manganello posited. Instead, the challenge may be that information is too complex to understand.

 

“One thing to remember is that health literacy is viewed as a combination of an individual’s skills and the complexity of the information or health care environment they need to navigate,” Manganello explained.

 

“While we need to think about innovative ways to improve health literacy for teens, another option is to focus on how we can help make the information and system easier to understand,” she continued. “For instance, many recommend that providers use the teach back method to ensure patients have clearly understood the information they are told.”

 

Healthcare professionals need to offer more support to their patients to facilitate patient understanding. Educational resources and an explanation of how various structures – related to both physical health and the healthcare industry as a whole – may be helpful for ensuring patients are well-equipped to navigate the system on their own.

 

“While many think of health literacy as the ability to read and understand health information, it goes beyond that,” Manganello concluded.

 

“Health literacy also includes skills such as numeracy, clear communication with providers, and the ability to obtain, understand, and think critically about health information,” she said. “An understanding of how to navigate the health system is important as well, which includes knowing the difference between a primary care provider and a specialist, for instance.”


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How Do mHealth, Mobile Health Devices Impact Patient Satisfaction?  #hcsmeufr #esante #digitalhealth #hcsmeu

How Do mHealth, Mobile Health Devices Impact Patient Satisfaction?  #hcsmeufr #esante #digitalhealth #hcsmeu | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
A recent survey found that mHealth technology and mobile health devices can drive better patient satisfaction scores for healthcare organizations.

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Florian Morandeau's curator insight, April 13, 1:41 AM

96% of healthcare organizations implementing mHealth have seen a positive impact on patient satisfaction.

Rescooped by Lionel Reichardt / le Pharmageek from Les actualités du GIE GERS - Groupement pour l'Elaboration et de Réalisation Statistiques
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L'Institut du Cerveau et de la Moelle épinière  @icm_institute lance une campagne publicitaire émotionnelle en immersion totale #journeemondialeParkinson #Parkinson #sante #Hcsmeufr 

L'Institut du Cerveau et de la Moelle épinière  @icm_institute lance une campagne publicitaire émotionnelle en immersion totale #journeemondialeParkinson #Parkinson #sante #Hcsmeufr  | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
A l’occasion de la Journée Mondiale de la Maladie de Parkinson, l’Institut du Cerveau et de la Moelle épinière lance une campagne publicitaire émotionnelle en immersion totale afin de faire un appel aux dons.

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GIE_GERS's curator insight, April 12, 3:25 AM

A l’occasion de la Journée Mondiale de la Maladie de Parkinson, l’Institut du Cerveau et de la Moelle épinière lance une campagne publicitaire émotionnelle en immersion totale afin de faire un appel aux dons.

 

Rescooped by Lionel Reichardt / le Pharmageek from "Autonomisation du patient (France et pays francophones) : littératie en santé | ETP | patients experts | Promotion de la santé | Droits des patients | e-santé, santé digitale et e-patients | TIC et hôpital numérique | IA et santé " by VAB Traductions
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Education thérapeutique : pour qui, pourquoi ? #hcsmeufr #esante 

Education thérapeutique : pour qui, pourquoi ? #hcsmeufr #esante  | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
L’éducation thérapeutique du patient (ETP) vous connaissez ? Il s’agit d’un accompagnement des patients atteints de pathologie chronique par des professionnels formés, pour les aider à mieux comprendre, mieux gérer leur maladie.

C’est un concept inscrit dans la loi française depuis 2009 et particulièrement encadré, ainsi que nous l’explique Brigitte Sandrin de l’association française pour le développement de l’éducation thérapeutique, que nous avons interviewée. Elle pose le décor de l’éducation thérapeutique en France dans la première partie de cet article.

On trouve des programmes d’éducation thérapeutique partout en France, pour diverses maladies. Ainsi pour compléter cette interview, 66 Millions d’IMpatients a rencontré des patients diabétiques reçus pour une semaine d’éducation thérapeutique dans un hôpital parisien. Ils nous ont fait part de leur parcours face à la maladie et de leurs attentes par rapport à ce programme.

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ONC Issues Guidebook for Patient Access to Health Information #hcsmeufr #esante #digitalhealth #hcsmeu

ONC Issues Guidebook for Patient Access to Health Information #hcsmeufr #esante #digitalhealth #hcsmeu | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it

April 04, 2018 - HHS and the Office of the National Coordinator for Health IT (ONC) has issued a new guidebook to assist patient access to health information. This playbook comes as a part of the HHS and CMS MyHealthEData initiative.

The ONC Guide to Getting and Using Your Health Records is an online and patient-facing document helping patients overcome the challenges they face in accessing their medical records. The guide reviews obtaining a patient health record, checking the health record for accuracy and completeness, and using health records and data sharing for better patient engagement.

This guidebook, in conjunction with the MyHealthEData initiative announced last month, supports HHS’s goals for better patient engagement. Patients become more activated in their own care and are empowered to make healthcare decisions when they can obtain access to their own medical records.

MyHealthEData and patient access to health data also aligns with the 21st Century Cures Act. Patient access to their own medical records is a measure of interoperability, HHS and ONC contend, as is the ability for a patient to send her own medical data to another healthcare provider.

“It’s important that patients and their caregivers have access to their own health information so they can make decisions about their care and treatments,” ONC head Don Rucker, MD, said in a statement. “This guide will help answer some of the questions that patients may have when asking for their health information.


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CORP REP REPORTS PUBLISHED 2018 #hcsmeufr #esante #digitalhealth #hcsmeu

CORP REP REPORTS PUBLISHED 2018 #hcsmeufr #esante #digitalhealth #hcsmeu | PATIENT EMPOWERMENT & E-PATIENT | Scoop.it
Companies assessed by patient groups: AbbVie I Acorda Therapeutics I Allergan I Almirall I Amgen I Astellas Pharma I AstraZeneca I Bayer I Bial I Biogen I Boehringer Ingelheim I Bristol-Myer

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PatientView's curator insight, April 5, 10:41 AM

Now out:

Corporate Reputation of the Pharma Industry in 2017 - from the Patient Perspective ... now in its 7th year

rob halkes's curator insight, April 5, 11:03 AM

Patients, when working with pharma and actually knowing the pharma company they work with, see developments to collaboration with them! Inspiring results from those who care! ;-)

http://www.patient-view.com/--corp-rep-reports-published-2018.html

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