Last month some 500 of us gathered in Bologna to remember Alessandro Liberati, founder of the Italian Cochrane Centre, a great thinker about
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To be effective in relieving suffering, doctors must strike a balance between paucity and excess of empathy.
As a young doctor working in the E.R. my capacity for compassion, and that of my colleagues, was often stretched; this was particularly the case when my patients could be said to have brought misfortune on themselves. I saw drug addicts suffering overdose, teenagers retching after self-poisoning, thieves injured through being arrested, all treated more brusquely than other theoretically more blameless patients.
I tried hard to maintain empathy, reflecting that the overdosed, self-poisoned and criminal may no more have brought their problems on themselves than those with skiing or horse-riding injuries or heart palpitations through overwork.
But it’s complicated: I’ve stitched up many slashed wrists cut not through willfulness but as a release from intense anguish; I’ve attended alcoholics for whom alcohol was clearly a substitute for love.
I may not have always succeeded, but I always hoped that my humanity, or my professional duty to provide a high standard of care, would step in when my compassion was running low.
By GAVIN FRANCIS
Via Edwin Rutsch
We here at Science-Based Medicine like to point out that arguably the most striking difference between science-based medicine (and the evidence-based medicine from which we distinguish it) and alternative medicine, “complementary and alternative medicine” (CAM), or (as it’s called now) “integrative medicine” is a concerted effort to change for the better. In other words, in SBM, we are continually doing studies to improve practice. These studies take on two general forms: Comparing new treatments with old to determine if the new treatments work better and, as has become an imperative over the last several years supported by more research dollars, comparing existing treatments in order to determine which ones work better. In the case of the former, we are trying to add to our knowledge and thereby add more effective treatments, while in the case of the latter we are trying to weed out treatments that are less effective and/or less safe or that cost more money to produce the same results. Indeed, the rise of an explicit framework, evidence-based medicine, is a result of the desire of medicine as a profession to improve what it is doing. (Yes, I know this blog frequently criticizes EBM, but in the case of treatments that have science behind them EBM and SBM should be—and usually are—synonymous.) This is in marked contrast to CAM, where treatments based on prescientific vitalism never, ever go away, no matter how many clinical trials show them to be no better than placebo and basic science shows them to be ludicrously disconnected from reality
There’s a misconception that I frequently hear about evidence-based medicine (EBM), which can equally apply to science-based medicine (SBM). Actually, there are several, but they are related. These misconceptions include the idea that EBM/SBM guidelines are a straightjacket, that they are “cookbook medicine,” and that EBM/SBM should be the be-all and end-all of how to practice clinical medicine. New readers might not be familiar with the difference between EBM and SBM, and here is not the place to explain the difference in detail because this post isn’t primarily about that difference. However, for interested readers, a fuller explanation can be found here, here, here, and here. The CliffsNote version is that EBM fetishizes the randomized clinical trial above all other forms of medical investigation, a system that makes sense if the treatments being tested in RCTs have a reasonably high prior probability of translating to human therapies based on basic science mechanisms, experimental evidence in cell culture, and animal experiments. UsingBayesian considerations, when the prior probability is very low (as is the case for, for example, homeopathy), there will be a lot of false positive trials. Such is how EBM was blindsided by the pseudoscience of “complementary and alternative medicine” (CAM) or, as it is called now, “integrative medicine.”
En France, pas d’« explosion » mais… une baisse de la fréquence depuis 2004
En France, depuis 2004, à taille de population égale et à âge égal, la fréquence du cancer du sein diminue (figure 1). Si le nombre augmente, c’est parce que la population augmente et aussi parce qu’elle vieillit.
Si le nombre de cancers du sein diagnostiqués chaque année en France a bien augmenté de 21 000 à 49 000 entre 1980 et 2012, la moitié de cette augmentation est due à l’accroissement et au vieillissement de la population. Le taux pour 100 000 standardisé sur l’âge (c’est à dire en « gommant » les effets du vieillissement et de la croissance de la population) est passé de 76 à 133 entre 1980 et 2004, puis est redescendu à 118 en 2012.
Les données d’incidence utilisées ont comme source les hospices civils de Lyon et l’association des registres de cancer. Les hospices civils extrapolent à la France entière les données observées dans les registres départementaux qui couvrent aujourd’hui 20 % de la population. Ces données sont en ligne sur le site de l’InVS (Institut de veille sanitaire)1 (qui s’appelle Santé Publique France depuis son regroupement avec l’INPES -Institut national de prévention et d’éducation pour la santé- en 2014).
There is no greater pursuit in life than that of making healthcare better for all. Ever since I can recall, I'd wanted to become a doctor. And that desire was driven by a need, a calling, to make a difference in the life of the patients we see. The spirit of that vulnerable, hopeful, yet determined patient-- embodied by a growing number of outstanding patient-advocates--now, that's inspiring!
My inspirations have come from many directions. Early imprints came from my mom, and her unwavering need to serve those around her and to leave things better than when you first found them. Her unapologetic dedication to anything she'd put her heart to, and her relentless energy and focus to do good by this world - - that's the sort of inspiration only the lucky few get to experience.
The great thinkers of the Age of Reason and the Enlightenment were scientists. Not only did many of them contribute to mathematics, physics, and physiology, but all of them were avid theorists in the sciences of human nature. They were cognitive neuroscientists, who tried to explain thought and emotion in terms of physical mechanisms of the nervous system. They were evolutionary psychologists, who speculated on life in a state of nature and on animal instincts that are “infused into our bosoms.” And they were social psychologists, who wrote of the moral sentiments that draw us together, the selfish passions that inflame us, and the foibles of shortsightedness that frustrate our best-laid plans.
Analysis of the second NEJM Catalyst Insights Council Survey on the Patient Engagement theme. Qualified executives, clinical leaders, and clinicians mayjoin the Insights Council and share their perspectives on health care delivery transformation.
The foundation has been laid for exciting advances in patient engagement, according to the second NEJM Catalyst Patient Engagement Survey. With fundamental patient engagement strategies such as patient portals and secure email firmly in place, health care organizations are now turning to Patient Engagement 2.0 — initiatives that will get patients even more involved in their care.
The survey was fielded to gauge participation in, and effectiveness of, patient engagement across health systems, hospitals, and physician organizations. More than 69% of respondents report that their organizations use patient engagement initiatives to increase patients’ meaningful participation in care.
Via Pharma Guy
According to Gavin McMahon from Make a Powerful Point, there is no one single type of presenter that would fit everyone. After a decade of working with presenters from all types of industries, he created the following categorization scheme for different presenter types:
Doctors have become a profession of whiners. Meetings, dinners, doctor lounges and the blogosphere are flooded with physician complaints, tirade, and anger. The volume of pained voices suggests that health Armageddon is only a few moments away.
It was not always so. Medicine is a career where idealism runs rampant. In medical school interviews, young students really do answer that they want to help their fellow man. Nonetheless, in recent years that has changed.
Ultimately, we moved past this conversation to a more pressing one about how to proceed with treatment. But Jody reminded me once more that evidence has its place, but it’s not gospel. In the end, the data need to be interpreted by our patients, in the context of their own preferences and values, and each person will reach a different conclusion. In the end, evidence should inform our guidance, but it should not be used to enforce mandates.
Le 8 septembre 2016, l’Obs, ex Nouvel Observateur, en partenariat avec France Info, consacrait sa couverture à des « révélations sur une crise sanitaire » et relayait les propos alarmistes d’André Cicolella (membre de la commission santé d’Europe-Ecologie les Verts, administrateur de la Fondation sciences citoyennes et président de l’association Réseau Environnement Santé) dans un dossier intitulé en ligne « Cancer du sein : Un empoisonnement qui commence dès le stade fœtal » et « La vérité sur le cancer du sein » dans la version papier . Il dénonce « une croissance spectaculaire de la maladie », une « épidémie » dont les causes environnementales seraient niées par les autorités.
Propos qui vont pourtant à l’opposé des chiffres observés et des données scientifiques publiées !
L’Association Française pour l’Information Scientifique (AFIS) déplore que le cancer du sein qui représente un fléau pour la santé des femmes soit un sujet instrumentalisé quand des informations fiables seraient bienvenues. C’est pourquoi l’AFIS met en ligne sur son site Internet une analyse de l’épidémiologiste Catherine Hill « Comment se construit une fausse alerte » .
Les alertes sanitaires, quand elles s’appuient sur des faits étayés et scientifiquement validés sont salutaires. À l’inverse, de fausses alertes scientifiques, ignorant ou déformant les données scientifiques et les chiffres, peuvent avoir des effets très dommageables.
En septembre 2012, le Nouvel Observateur avait déjà titré « Les OGM sont des poisons »  sur la base d’une étude dont le contenu avait été contesté par l’ensemble des agences sanitaires qui s’était penché dessus au niveau français et international .
Que l’Obs exploite le filon de l’anxiété et des alertes non fondées est son droit. Mais il est regrettable que France Info se prête également à une telle campagne, surfant sur le sensationnalisme sans le souci ni de la véracité des « informations » colportées, ni de l’inquiétude légitime mais injustifiée ainsi propagée dans la population.
On attendrait en effet d’une radio du service public la promotion d’une information objective et étayée sur les données de la science.
La mossa è coraggiosa e azzardata, perché difficilmente consentirà transazioni o compromessi. Ma Nazí Nodarovna Paikidze-Barnes è una pluridecorata campionessa di scacchi ed ha certamente previsto anche le possibili contromosse degli avversari, il governo iraniano e la Federazione internazionale di scacchi, all’annuncio che lei non parteciperà al prossimo campionato mondiale, a Teheran, se sarà obbligata a indossare il velo. Ventitré anni, origini russo-georgiane, sposata a un cittadino statunitense, Nazí gioca con i colori americani dal 2013, e sa benissimo che il regime del Paese ospitante non consentirà a lei, né ad alcuna delle altre scacchiste, di giocare a capo scoperto, inaugurando una stagione di pericolose deroghe alla regola vigente, senza eccezioni, da 37 anni. Nazí può sperare però che, di fronte all’ammutinamento anche di altre regine della scacchiera, il torneo sia tolto all’Iran e disputato altrove. La decisione però dispiacerebbe parecchio alle colleghe iraniane, convinte che non sia questo genere di braccio di ferro ad aiutare l’emancipazione femminile nella Repubblica islamica.
The recent revelation that the sugar industry attempted to manipulate science in the 1960s1 has once again focused attention on the quality of the scientific evidence in the field of nutrition and how best to prevent diet-related chronic disease.
Beginning in the 1970s, the US government and major professional nutrition organizations recommended that individuals in the United States eat a low-fat/high-carbohydrate diet, launching arguably the largest public health experiment in history. Throughout the ensuing 40 years, the prevalence of obesity and diabetes increased several-fold, even as the proportion of fat in the US diet decreased by 25%. Recognizing new evidence that consumption of processed carbohydrates—white bread, white rice, chips, crackers, cookies, and sugary drinks—but not total fat has contributed importantly to these epidemics, the 2015 USDA Dietary Guidelines for Americans essentially eliminated the upper limit on dietary fat intake.2However, a comprehensive examination of this massive public health failure has not been conducted. Consequently, significant harms persist, with the low-fat diet remaining entrenched in public consciousness and food policy. In addition, critical scientific questions have been muddled.
Avec le numérique, ne peut-on pas générer ces « révolutions minuscules » ou ces « petits moments magiques », qui bousculent les certitudes et qui « boostent » la réflexion des élèves comme le disait si bien Jean Pierre Astolfi, et qui permettent aussi une réflexion des enseignants sur les différentes façons d’apprendre? Ces moments de manipulation via les interfaces numérique et en liaison avec l’apprenant directement concerné, ne sont-ils pas une façon de faire vivre concrètement dans l’action, l’expérience de ce qu’un savoir en construction produit comme surprise et inspiration ? Nous pouvons repenser ici à ce que Louis Legrand appelait une « pédagogie de l’étonnement » et Georges Snyders « la joie à l’école » !
Via Pierre Levy
Have you ever made a resolution to acquire a healthier lifestyle by changing your behaviour? Whether you wanted to be less stressed, cut out junk food, or stop smoking, you probably defined some simple rules and rewards to influence your behaviour and hopefully achieve that goal. When you applied those rules, you were in fact practicing “gamification”, the process of applying game mechanics to a real-life situation in order to generate a desired outcome. Unfortunately, you didn’t have the resources to turn those ideas into an exciting app.
A recent CDC survey showed that workplace efforts to prevent cardiovascular disease may get the most bang for their buck in the social services and transportation fields.
Using data from the 2013 Behavioral Risk Factor Surveillance System, the investigators analyzed responses from nearly 67 000 participants in 21 states who answered questions about their occupation and 7 “ideal” cardiovascular health habits established by the American Heart Association. Specifically, the investigators asked whether participants smoked; were physically active; had healthy blood pressure, blood glucose, and cholesterol levels; were overweight or obese; and ate a healthful diet.
When a patient’s illness escalates to an advanced disease or when a loved one suddenly dies, it is an emotional and stressful time for patients, family members and caregivers, who face many difficult decisions. Patients with an advanced condition need to determine what their care goals should be, and family members who have lost a loved one are burdened with a host of decisions during a time of grief.
And many physicians and healthcare leaders believe there continue to be care gaps with regard to end-of-life planning services and resources within the healthcare system.
Leading healthcare provider organizations and digital health companies are increasingly focusing their efforts on end-of-life planning and advance care planning in to order to deploy healthcare resources more appropriately to patients and families and promote a better patient experience. In many ways, digital health technology can play a crucial role in improving end-of-life planning and advance directives, and it’s an area that is long overdue for modernization and innovation.
Via Adrian Adewunmi Ph.D
E’ di grande interesse la riflessione di Eco su “la Repubblica” del 13 settembre, “Mezzo e messaggio quei cortocircuiti al tempo delle mail”, a proposito di quanto il mezzo condizioni il messaggio, soprattutto oggi in un contesto in cui cellulari e tablet dominano ogni minuto della nostra quotidianità. Il medium è il messaggio: si tratta della constatazione ormai più che nota che fece McLuhan nel suo famoso saggio degli anni Sessanta, quando la pervasività della televisione imponeva di fatto riflessioni nuove a proposito della teoria della comunicazione. Ricorda giustamente Eco come, fin dalle prime teorizzazioni sulla vicenda comunicativa (siamo nella prima metà del secolo scorso), il modello costituito da EMITTENTE, RICEVENTE, MEZZO e MESSAGGIO funzionasse ottimamente per comprendere quali fossero le condizioni materiali perché il campo della comunicazione fosse attivo e i messaggi trasmessi e ricevuti. Tuttavia, si ravvisò che era anche necessario che si considerassero altri due fattori, indispensabili ai fini della correttezza e della efficacia del messaggio trasmesso e ricevuto: il CODICE e il REFERENTE, per usare le espressioni di Jakobson. In effetti, ogni messaggio si costruisce in forza di un codice, di un linguaggio che deve essere condiviso dagli interlocutori. Posso parlare in perfetto italiano a un cinese che non conosce la mia lingua e il messaggio non viene compreso: quindi, di fatto, non esiste, perché il CODICE non è condiviso. Allo stesso modo, il referente – o, se si vuole, il “riferito”, l’oggetto della informazione lanciata – deve essere condiviso dal ricevente. Se faccio una dichiarazione d’amore, che costituisce il REFERENTE, cioè l’oggetto del mio messaggio, il ricevente potrà anche comprenderla in ordine al codice, ma non condividerla in ordine al contenuto. Respinge di fatto il messaggio al mittente, come si suol dire e si situa fuori dal campo della comunicazione. E bisogna sempre sperare che l’innamorato non torni alla carica fino a diventare uno stalker.
Via Luis Manuel
Social media are dynamic and interactive computer-mediated communication tools that have high penetration rates in the general population in high-income and middle-income countries. However, in medicine and health care, a large number of stakeholders (eg, clinicians, administrators, professional colleges, academic institutions, ministries of health, among others) are unaware of social media’s relevance, potential applications in their day-to-day activities, as well as the inherent risks and how these may be attenuated and mitigated.
We conducted a narrative review with the aim to present case studies that illustrate how, where, and why social media are being used in the medical and health care sectors.
Using a critical-interpretivist framework, we used qualitative methods to synthesize the impact and illustrate, explain, and provide contextual knowledge of the applications and potential implementations of social media in medicine and health care. Both traditional (eg, peer-reviewed) and nontraditional (eg, policies, case studies, and social media content) sources were used, in addition to an environmental scan (using Google and Bing Web searches) of resources.
We reviewed, evaluated, and synthesized 76 articles, 44 websites, and 11 policies/reports. Results and case studies are presented according to 10 different categories of social media: (1) blogs (eg, WordPress), (2) microblogs (eg, Twitter), (3) social networking sites (eg, Facebook), (4) professional networking sites (eg, LinkedIn, Sermo), (5) thematic networking sites (eg, 23andMe), (6) wikis (eg, Wikipedia), (7) mashups (eg, HealthMap), (8) collaborative filtering sites (eg, Digg), (9) media sharing sites (eg, YouTube, Slideshare), and others (eg, SecondLife). Four recommendations are provided and explained for stakeholders wishing to engage with social media while attenuating risk: (1) maintain professionalism at all times, (2) be authentic, have fun, and do not be afraid, (3) ask for help, and (4) focus, grab attention, and engage.
The role of social media in the medical and health care sectors is far reaching, and many questions in terms of governance, ethics, professionalism, privacy, confidentiality, and information quality remain unanswered. By following the guidelines presented, professionals have a starting point to engage with social media in a safe and ethical manner. Future research will be required to understand the synergies between social media and evidence-based practice, as well as develop institutional policies that benefit patients, clinicians, public health practitioners, and industry alike.
La farmacéutica francesa y Alphabet, matriz del gigante de Internet, desarrollarán dispositivos y servicios para el control de la diabetes. La farmacéutica francesa Sanofi y Verily Life Sciences (antes Google Life Sciences), filial de Alphabet, han creado la sociedad conjunta Onduo para el desarrollo de soluciones que combinen dispositivos, medicina, software y otros servicios dirigidos a mejorar la calidad de vida de las personas con diabetes. Esta nueva sociedad, un ejemplo más de los lazos que están surgiendo entre los sectores farmacéutico y tecnológico en el área de salud, tiene previsto invertir 500 millones de dólares. Entre los productos a la venta figurarán dispositivos conectados como plumas de insulina y servicios online.
Via Ignacio Fernández Alberti