Co-creation in health
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The duality that cancer patients face

The duality that cancer patients face | Co-creation in health | Scoop.it
I was struck by a number of dichotomies, or dualities, as I reflected on my reactions and the reactions of those around me.
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Co-creation in health
E-citizens, e-patients, communities in shaping e-health, health literacy.
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Ci manchi

Ci manchi | Co-creation in health | Scoop.it

Gianfranco Domenighetti, Docente di Comunicazione e Economia Sanitaria, Università della Svizzera Italiana.

 

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The Fundamental Elements Of Personal Branding

The Fundamental Elements Of Personal Branding | Co-creation in health | Scoop.it
Whether you plan to start blogging about your daily life or building your own media company, if your goal is to become a household name then you need to define your personal brand, and it’s not enough to stop there. In today's hyper-competitive market, where people ask for your Instagram handle inst

Via Stefano Principato, Pharmacomptoir / Corinne Thuderoz
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"Album Primo Levi", a cura di Roberta Mori e Domenico Scarpa: in libreria dal 7 novembre - Centro Internazionale di Studi Primo Levi

"Album Primo Levi", a cura di Roberta Mori e Domenico Scarpa: in libreria dal 7 novembre - Centro Internazionale di Studi Primo Levi | Co-creation in health | Scoop.it

A trent'anni dalla scomparsa di Primo Levi, questo volume intende proporre al pubblico un originale ritratto, per testi e immagini, di una tra le figure piú complesse della letteratura e della cultura del Novecento.

Né biografia né saggio monografico, l’Album Primo Levi si configura piuttosto come un film documentario steso su carta, data la rilevanza che vi assume il materiale iconografico, rappresentato da oltre 400 immagini in gran parte inedite, e da un graphic novel dell’artista Yosuke Taki, ispirato al racconto «Carbonio». Il lavoro dei due curatori lega in una documentata trama narrativa ciascuno degli ampi quadri tematici in cui l’opera è suddivisa. Dedicate rispettivamente al mestiere di chimico, al rapporto con la montagna, all’esperienza del Lager, ai mondi della scrittura e della traduzione, e infine alle declinazioni del «fare» creativo – artistico o professionale –, le sezioni dell’Album sono completate da due appendici. La prima, topografica, presenta i luoghi essenziali nella vita di Primo Levi, a Torino e nel Piemonte - Valle d’Aosta; la seconda, in chiusura, è un riepilogo cronistorico per immagini.

Album Primo Levi è pubblicato da Giulio Einaudi editori nella collana «Saggi»

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Patient Participation at Health Care Conferences: Engaged Patients Increase Information Flow, Expand Propagation, and Deepen Engagement in the Conversation of Tweets Compared to Physicians or Resea...

Patient Participation at Health Care Conferences: Engaged Patients Increase Information Flow, Expand Propagation, and Deepen Engagement in the Conversation of Tweets Compared to Physicians or Resea... | Co-creation in health | Scoop.it

Background: Health care conferences present a unique opportunity to network, spark innovation, and disseminate novel information to a large audience, but the dissemination of information typically stays within very specific networks. Social network analysis can be adopted to understand the flow of information between virtual social communities and the role of patients within the network.

Objective: The purpose of this study is to examine the impact engaged patients bring to health care conference social media information flow and how they expand dissemination and distribution of tweets compared to other health care conference stakeholders such as physicians and researchers.

Methods: From January 2014 through December 2016, 7,644,549 tweets were analyzed from 1672 health care conferences with at least 1000 tweets who had registered in Symplur’s Health Care Hashtag Project from 2014 to 2016. The tweet content was analyzed to create a list of the top 100 influencers by mention from each conference, who were then subsequently categorized by stakeholder group. Multivariate linear regression models were created using stepwise function building to identify factors explaining variability as predictor variables for the model in which conference tweets were taken as the dependent variable.

Results: Inclusion of engaged patients in health care conference social media was low compared to that of physicians and has not significantly changed over the last 3 years. When engaged patient voices are included in health care conferences, they greatly increase information flow as measured by total tweet volume (beta=301.6) compared to physicians (beta=137.3, P<.001), expand propagation of information tweeted during a conference as measured by social media impressions created (beta=1,700,000) compared to physicians (beta=270,000, P<.001), and deepen engagement in the tweet conversation as measured by replies to their tweets (beta=24.4) compared to physicians (beta=5.5, P<.001). Social network analysis of hubs and authorities revealed that patients had statistically significant higher hub scores (mean 8.26×10-4, SD 2.96×10-4) compared to other stakeholder groups’ Twitter accounts (mean 7.19×10-4, SD 3.81×10-4; t273.84=4.302, P<.001).

Conclusions: Although engaged patients are powerful accelerators of information flow, expanders of tweet propagation, and greatly deepen engagement in conversation of tweets on social media of health care conferences compared to physicians, they represent only 1.4% of the stakeholder mix of the top 100 influencers in the conversation. Health care conferences that fail to engage patients in their proceedings may risk limiting their engagement with the public, disseminating scientific information to a narrow community and slowing flow of information across social media channels.

 

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Giovanna : "chaque malade que j'ai rencontré a été particulièrement touchant" - We Are Patients | Histoires de patients et malades

Giovanna : "chaque malade que j'ai rencontré a été particulièrement touchant" - We Are Patients | Histoires de patients et malades | Co-creation in health | Scoop.it

Avocate italienne, Giovanna vit aujourd’hui à Paris où elle met en œuvre son engagement dans les questions de parité, d’égalité et d’accès aux droits des malades. Actuellement en mission au Service public d’Information Santé au Ministère de la santé, elle est également à l’initiative de Cancer Contribution.

Présente à l’Université d’Été des déserts médicaux et numériques début septembre, elle a accepté de répondre à nos questions. Giovanna évoque notamment son engagement auprès des sujets fragilisés.


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Minds turned to ash. Is burnout simply the result of working too hard? The Economist - Josh Cohen

Minds turned to ash. Is burnout simply the result of working too hard? The Economist - Josh  Cohen | Co-creation in health | Scoop.it

When Steve first came to my consulting room, it was hard to square the shambling figure slumped low in the chair opposite with the young dynamo who, so he told me, had only recently been putting in 90-hour weeks at an investment bank. Clad in baggy sportswear that had not graced the inside of a washing machine for a while, he listlessly tugged his matted hair, while I tried, without much success, to picture him gliding imperiously down the corridors of some glassy corporate palace.

Steve had grown up as an only child in an affluent suburb. He recalls his parents, now divorced, channelling the frustrations of their loveless, quarrelsome marriage into the ferocious cultivation of their son. The straight-A grades, baseball-team captaincy and Ivy League scholarship he eventually won had, he felt, been destined pretty much from the moment he was born. “It wasn’t so much like I was doing all this great stuff, more like I was slotting into the role they’d already scripted for me.” It seemed as though he’d lived the entirety of his childhood and adolescence on autopilot, so busy living out the life expected of him that he never questioned whether he actually wanted it.

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Very Few Patient Groups Don’t Take Pharma Money

Very Few Patient Groups Don’t Take Pharma Money | Co-creation in health | Scoop.it

Most patient and consumer advocacy groups receive funds from the pharmaceutical industry, according to a new study released by the group PharmedOut.

 

Only a handful out of 7,685 health advocacy groups in the U.S. are completely independent of pharmaceutical industry money, according to a list the group released Oct. 13. PharmedOut is a Georgetown University Medical Center project that advances evidence-based prescribing and educates health-care professionals about pharmaceutical marketing practices.

 

And industry funding of patient groups, including websites and informational materials, is often not apparent to the average consumer, which could mislead consumers into believing they’re getting unbiased health advice.

 

“Industry funding is often not disclosed on websites or informational materials or is hidden,” PharmedOut Director Adriane Fugh-Berman told me in an Oct. 16 phone call. Funding and sponsorship is often very subtle and difficult to identify, she said.

 

In addition, she said, industry sponsorship can affect the stands patient and consumer groups are willing to take, she said.

 

Groups that accept industry funding are affected by that money, regardless of whether they think they are, she said.

 

"Look at the stands taken and not taken,” she said. “For example, where is the anger and outrage about drug costs?”

 

Fugh-Berman is an associate professor in the Department of Pharmacology and Physiology and in the Department of Family Medicine at Georgetown University Medical Center.

 

Further Reading:

  • “Pharma 'Patient Centricity' Aids & Abets the Opioid Epidemic”; http://sco.lt/5RJse1

  •  “93% of Patient Advocacy Groups Included in FDA Funding Discussions Receive $ from Pharma”; http://sco.lt/8jkvFh

  • “Patient Advocacy Groups with Funding & Form Letter from @PhRMA Oppose Nevada Legislation”; http://sco.lt/6QlP9N
  • “More Than Two-thirds of Patient Advocacy Groups Receive Industry Funding”; http://sco.lt/6Ftgzh

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da P. P. Pasolini sul consumismo e la mutazione antropologica

testi tratti dagli scritti di Pasolini lettura valter zanardi
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Lettera a una professoressa

"Io non considero che chi sappia leggere la gazzetta dello sport sappia leggere"
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Pharma must radically rethink its engagement with doctors... - Truth About Doctors - McCann Health

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Should We Stop Suggesting Physicians are "Bought" by Pharma Gifts?

Should We Stop Suggesting Physicians  are "Bought" by Pharma Gifts? | Co-creation in health | Scoop.it

Every few months, another study is released with the same general theme: Gifts from pharmaceutical companies compel docs to prescribe more costly drugs.

 

Last June, it was JAMA Internal Medicine suggesting that a single meal swayed doctors’ prescribing habits. Now, a review of Washington, D.C.-based physicians is again painting the entire profession in a bad light.

 

In a study published in the journal PLOS One, 2,873 Medicare Part D prescribers in the nation’s capital were analyzed based on their prescribing habits. The study found that 39% of the docs received gifts from pharmaceutical representatives in 2013—ranging from meals to ownership interest in products.

 

These physicians wrote 2.3 more prescriptions per patient claim, prescribed $450 more in medications per claim and prescribed 7.8% more branded drugs compared with those who did not receive a gift. The study also cited internal medicine and family medicine as two of the specialties most associated with significantly increased average cost of prescription claims.

 

[BTW, these were not physicians. Read “Nurse Practitioners and Physician Assistants are Also Swayed by Gifts from Pharma”; http://sco.lt/7ZWafp]

 

… to simply claim that “gift equals increased prescriptions” is not only disingenuous, it’s offensive to all doctors throughout the U.S. (not only those based in D.C.) And it is just unnecessary information to share with patients without explaining more of the details of these exchanges, which is simply not available in every case.

 

Physicians will do what is best for their patients. It’s time that studies like this start putting some facts behind their inflammatory research.


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Pharma Guy's curator insight, November 15, 2:59 PM

I think research results go beyond "suggesting" - there's proof! You know, based on data. Similar to how pharma is able to "suggest" that drugs work :)

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What Level of Health Spending Is “Affordable”?

Among the much-repeated words woven into the US debate on national health policy are “affordability” and “sustainability.” Indeed, this debate is not confined to the United States. Remarkably, no one knows what these words actually mean at the practical level. Is there any economist or other expert, for example, who could be sure what percentage of the gross domestic product (GDP) the United States can “afford” to spend on health care, or what level of spending on Medicare is “sustainable”?

 

To illustrate, according to the latest report from the Boards of Trustees of the Federal Hospital Insurance and Federal Supplementary Medical Insurance Trust Funds,1 spending on the federal Medicare program currently is 3.6% of a GDP per capita of about $58 000. That leaves $55 912 of non-Medicare GDP for all other spending. The trustees project that by 2050, Medicare will account for 6% of GDP. Assuming a low future rate of growth of only 1% per year for real GDP per capita, spending on Medicare will be 6% of a projected inflation-adjusted GDP per capita of $80 544 (with the 6% spending leaving the contemporaries living in 2050 a non-Medicare GDP per capita of $75 500). That amount is 35% higher than non-Medicare GDP per capita today. So will a spending level of 6% of GDP per capita in 2050 be affordable? Is Medicare sustainable?

 

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How to Rethink Change with the Three Percent Rule - Analytics in HR

How to Rethink Change with the Three Percent Rule - Analytics in HR | Co-creation in health | Scoop.it

Why organizational network analysis and people analytics are the ingredients for successful change initiatives

You are responsible for making a success out of a change initiative at your organization. The books and articles you have read in the past make you a bit frightened with this responsibility, because the literature is more about the failure of change than the success of it. And if you then finally found a success story, can it be adopted to your specific organizational context, cultural norms and expectations?

Most of the change methods are designed for the past. These methods worked well in situations where command-and-control or top-down was still king and business environments were stable. Change could be initiated through the formal internal communication processes, because people read news on the Intranet and the employee magazines from start to end.

These methods are from the past. We need to have methods for the future. This article is about a method for the future: The Three Percent Rule.

 

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PHARMA-FREE ADVOCACY GROUPS: the list of health advocacy and consumer groups that take no funding from pharmaceutical

PHARMA-FREE ADVOCACY GROUPS: the list of health advocacy and consumer groups that take no funding from pharmaceutical | Co-creation in health | Scoop.it

This is a list of health advocacy and consumer groups in the U.S. and Canada that take no funding from pharmaceutical, medical device, or biotech companies. The voices of independent groups that truly represent patients and consumers are drowned out by the thousands of groups that take money from industry and push industry viewpoints – or stay silent on drug safety, drug costs, and other issues vital to patients. This list is meant to be a resource for media and consumers who want to listen to – and support – independent groups whose opinions are not swayed by industry.

To learn more about pharma-funded advocacy groups, please read some of our articles on how pharma-funded groups negatively affect healthcare. For an in-depth analysis of the effect of industry funding of breast cancer groups, check out Health Advocacy, Inc.

Want to be on the list? If you represent a patient or consumer health advocacy group that does not take money from manufacturers of drugs, medical devices, biologics, or diagnostics, please email us at pharmedout@gmail.com with a link to your organization's website, 3 years worth of 990s (or t1004 or t3020 for Canadian groups) and annual reports, and a statement that the organization does not take money from industry and has a policy not to take money from industry. The groups submitted will be vetted by a committee that includes Sharon Batt PhD, author of Health Advocacy, Inc. and Adriane Fugh-Berman MD, director of PharmedOut.

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Lionel Reichardt / le Pharmageek's curator insight, October 28, 4:54 AM

C'est tellement simple de dire que si l'association de patients touche de l'argent d'un labo elle n'est plus independante... #cliché #caricature 

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Diseguali-perché: Which Inequalities? Which Policies? Which Data are They Counting on? - con Joseph Stiglitz

Diseguali perché perché rifugiati, perché stranieri, perché figli di un altro Dio, perché scomodi, perché poveri, perché senza le stesse opportunità, perché donne, perché giovani… Dodici incontri aperti alla cittadinanza sui temi delle disuguaglianze per discutere e capire, con uno sguardo che vuole scendere in profondità, le radici delle disparità e rispondere al perché non siamo tutti uguali.

 

Un programma di incontri promosso dall’Istituto Cattaneo

a cura di Pier Giorgio Ardeni con il sostegno della Fondazione Maccaferri

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13 stunning stats on patient-centricity

13 stunning stats on patient-centricity | Co-creation in health | Scoop.it

Digital transformation means your patients are also customers

Health care organizations looking to succeed at digital transformation must be sure they are reading patient charts correctly.

With the health care IT market expected to be worth $280.25 billion by 2021 as both clinical and non-clinical information systems are deployed, health care organizations will only see the best return-on-investment from their digital initiatives if they properly leverage patient insight.

Right now, however, the prognosis isn’t good; many health care organizations are doing a poor job of reading their customers’ vitals.

Clearly, there’s been a misdiagnosis. The 13 stats below highlight what health care providers need to consider to become truly patient-centric organizations.

Misdiagnosis of patient satisfaction

One of the biggest challenges to becoming patient-centric is the lack of available metrics for health care providers. Too often, there is a mismatch between the services offered and whether those services are well received by patients.

1. Research by Prophet found that 81 percent of consumers are unsatisfied with their health care experience, and the less they interact with the system, the happier they are.

2. And while 63 percent of health care organizations believe they are delivering on patient care, only 43 percent of patients actually agree.  

 

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“Worse Than Big Tobacco”: How Big Pharma Fuels the Opioid Epidemic. A Market for Lies

“Worse Than Big Tobacco”: How Big Pharma Fuels the Opioid Epidemic. A Market for Lies | Co-creation in health | Scoop.it
“Worse Than Big Tobacco”: How Big Pharma Fuels the Opioid Epidemic

By Lynn Parramore

OCT 10, 2017 | HEALTHCARE

Over a 40-year career, Philadelphia attorney Daniel Berger has obtained millions in settlements for investors and consumers hurt by a rogues’ gallery of corporate wrongdoers, from Exxon to R.J. Reynolds Tobacco. But when it comes to what America’s prescription drug makers have done to drive one of the ghastliest addiction crises in the country’s history, he confesses amazement.

“I used to think that there was nothing more reprehensible than what the tobacco industry did in suppressing what it knew about the adverse effects of an addictive and dangerous product,” says Berger. “But I was wrong. The drug makers are worse than Big Tobacco.”

The U.S. prescription drug industry has opened a new frontier in public havoc, manipulating markets and deceptively marketing opioid drugs that are known to addict and even kill. It’s a national emergency that claims 90 lives per day. Berger lays much of the blame at the feet of companies that have played every dirty trick imaginable to convince doctors to overprescribe medication that can transform fresh-faced teens and mild-mannered adults into zombified junkies.

 

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Yannick Pelletier - The Hedgehog - a universal system against 1.c4 and 1.Nf3

This is a sample of the DVD The Hedgehog - a universal system against 1.c4 and 1.Nf3 by Yannick Pelletier. More info through above mentioned link!

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Millenials and Boomers on “eHealth”

Millenials and Boomers on “eHealth” | Co-creation in health | Scoop.it

KEY TAKEAWAY: There are some differences between the way Millennials and Boomers approach health, but there is also a lot of consistency.  eHealth is often talked about within our industry, but how many have really asked consumers what THEY think about eHealth?

 

The last two days I have been sitting behind the darked glass listening to Millennials and Boomets talk about eHeath.  Specifically, we our client was interested in finding out the opportunities for eHealth and what each demographic segment expected. With our client’s permission here are some topline findings:

1ne: Millennials are more likely than Boomers to use eHealth tools including online consultations with doctors and using the Internet to compare treatment costs and outcomes.

2wo: The majority of Boomers said they use the Internet for health.  Specifically, they are looking to learn all they can about their health issues BEFORE seeing their doctor.  Millennials, on the other hand, prefer to use the Internet to manage their health and want a solution that offers consultation to Rx option.

3hree: We were surprised to hear, when asked for top health online resources, WebMD was hardly mentioned.  More are using another third party resource sites and social media.


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What do empowered and engaged really mean?  e-Patient Dave deBronkart

In participatory medicine we say that e-patients are "empowered and engaged." But what does that really mean, in practice? This 9 minute presentation offer
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Lavorare troppo non è figo - di Luca Foresti

Lavorare troppo non è figo - di Luca Foresti | Co-creation in health | Scoop.it

Il numero di ore lavorate, per chi lavora, in media, continua a calare, un po’ ovunque: Ma dentro alla media c’è una parte dei lavoratori che invece lavora molte ore.

 

Gli stimoli che riceviamo durante le ore di lavoro tendono a essere più monocordi. Tendono a renderci più rigidi. Ecco perché secondo me lavorare troppo peggiora anche la performance sul lavoro. Do per scontato che le persone abbiano la maturità e abilità per spingere sull’acceleratore quando ce n’è bisogno e quindi possano spendere brevi periodi di tempo in cui lavorano molto di più. Ma questi periodi non possono diventare la normalità.

Lavorare troppo a mio parere non è figo, non è segno di equilibrio, non deve essere incensato come un comportamento da imitare.

Abbiamo bisogno di diventare persone capaci di lavorare bene e forte quando lo facciamo e di dedicare sempre più tempo ad altro.

Anche per fare in modo che quando ci avviciniamo alla nostra fine, guardando alla nostra vita possiamo dire che è stata degna di essere vissuta.

Twitter @lforesti

 
 
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The self-testing revolution has arrived, but what does instant diagnosis mean for patients and the healthcare system?

The self-testing revolution has arrived, but what does instant diagnosis mean for patients and the healthcare system? | Co-creation in health | Scoop.it

 Since the first home pregnancy test in the 1960s, self-testing kits for diseases and conditions such as human papilloma virus (HPV), diabetes and high cholesterol have emerged online or in pharmacies.

Meanwhile, in many areas of the UK, home-testing kits for chlamydia, gonorrhoea and others have become available as free locally-commissioned healthcare services.

Self-diagnosis goes beyond a vague internet search; it is becoming the norm. Pharma will be keeping its own finger on the pulse as increased diagnosis leads to greater demand for products.

 

Early days

Dr Clare Morrison, GP at online doctor and pharmacy MedExpress says: “These tests will probably cause more pressure on primary care, as patients will want to ask about abnormal results with an expert, but they aren’t necessarily a bad thing for patients. If a patient knows that they are positive for HPV, for example, they can make sure they get regular cervical smears to pick up abnormalities.”

Although self–testing can be of benefit, there can be other factors at play that may affect test results. “Glucose testing isn’t a bad idea if you have reason to suspect diabetes, perhaps because of excessive thirst or a strong family history, but bear in mind the fact that it will be affected by anything you have eaten recently,” cautions Dr Morrison.

“Just because you test negative, it doesn’t necessarily mean that you are entirely safe. High cholesterol and diabetes are more common as you age and gain weight, so testing when you’re young and slim may not detect it,” adds Dr Morrison. Go to medexpress.co.uk

 

Downsides

Superdrug pharmacist Tim Morgan urges patients to follow up: “In crude terms, some tests are more accurate than others and most home tests do not boast 100% accuracy. Although home-testing kits increase accessibility, if there is no process behind the test that allows the patient to receive advice around, for example, safe sex and STI prevention, then the test itself is not encouraging behaviour change.”

Self-testing kits for conditions such as diabetes are readily available online, however, charity Diabetes UK does not recommend their use to diagnose the condition. Douglas Twenefour, Deputy Head of Care for Diabetes UK, advises: “We would not recommend people to use a self-diagnosing kit if they are worried they have diabetes. Self-diagnosis results might not be accurate, as blood glucose levels vary in all individuals during any given day and people might be falsely reassured,” he explains.

“In addition, a positive diagnosis can only increase anxiety if someone does not have access to information and advice provided by a trained healthcare professional.”

 

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La technologie ne va pas faire disparaître le médecin - Philippe Coucke

La technologie ne va pas faire disparaître le médecin - Philippe Coucke | Co-creation in health | Scoop.it

«La technologie ne va pas faire disparaître le médecin. Elle va le rendre plus disponible pour s’investir dans l’humain, l’accompagnement du patient...», selon Philippe Coucke, 

Pour pouvoir travailler dans les meilleures conditions le médecin doit bénéficier d’une structure avec des systèmes intégrés, une acquisition des données dans des formats standard, un bon stockage et une fine analyse des données et surtout une sécurité et une sauvegarde de la vie privée. Pour lui, il faut «associer le big data à l’intelligence artificielle». Actuellement, le programme d’intelligence artificielle IBM Watson est déjà en mesure, en fonction du profil de pathologie encodé, de proposer dans certains cas le meilleur choix thérapeutique. Pour lui, la médecine de demain devra donc plus que jamais être davantage préventive, prédictive, personnalisée et participative...


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