Co-creation in health
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6 benefits of integrating ICD-10 codes | PhysBizTech

6 benefits of integrating ICD-10 codes | PhysBizTech | Co-creation in health |

The transition from ICD-9 to ICD-10 in October 2014 goes hand in hand with the goal of healthcare reform to improve quality and decrease the cost of care. With more than 171,000 codes as compared to just 17,849 in ICD-9, ICD-10 will provide a much more accurate method of quantifying the level of care. The transition will have a far-reaching impact on all populations of healthcare organizations, including physicians. - See more at:

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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 |

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


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The Square and the Tower: Networks and Power, from the Freemasons to Facebook - Niall Ferguson

The Square and the Tower: Networks and Power, from the Freemasons to Facebook - Niall Ferguson | Co-creation in health |
The 21st century has been hailed as the Age of Networks. However, in The Square and the Tower, Niall Ferguson argues that networks have always been with us, from the structure of the brain to the food chain, from the family tree to freemasonry. Throughout history, hierarchies housed in high towers have claimed to rule, but often real power has resided in the networks in the town square below. For it is networks that tend to innovate. And it is through networks that revolutionary ideas can contagiously spread. Just because conspiracy theorists like to fantasize about such networks doesn't mean they are not real. 

From the cults of ancient Rome to the dynasties of the Renaissance, from the founding fathers to Facebook, The Square and the Tower tells the story of the rise, fall and rise of networks, and shows how network theory--concepts such as clustering, degrees of separation, weak ties, contagions and phase transitions--can transform our understanding of both the past and the present.
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Powering Collective Human Intelligence

Pierre Lévy, a Fellow of the Royal Society of Canada, Professor at the University of Ottawa and Inventor of Information Economy Meta Language (IEML) participated in Risk Roundup to discuss “Powering Collective Human Intelligence”.
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An evidence-based framework on community-centred approaches for health: England, UK

An evidence-based framework on community-centred approaches for health: England, UK | Co-creation in health |


Community participation is a central concept for health promotion, covering a breadth of approaches, purposes and activities. This paper reports on a national knowledge translation project in England, UK, which resulted in a conceptual framework and typology of community-based approaches, published as national guidance. A key objective was to develop a conceptual framework linked to sources of evidence that could be used to support increased uptake of participatory methods across the health system. It was recognized that legitimacy of community participation was being undermined by a scattered evidence base, absence of a common terminology and low visibility of community practice. A scoping review, combined with stakeholder consultation, was undertaken and 168 review and conceptual publications were identified and a map produced. A ‘family of community-centred approaches for health and wellbeing’ was then produced as way of organizing the evidence and visually representing the range of intervention types. There are four main groups, with sub-categories: (i) strengthening communities, (ii) volunteer and peer roles, (iii) collaborations and partnerships and (iv) access to community resources. Each group is differentiated using key concepts and theoretical justifications around increasing equity, control and social connectedness. An open access bibliography is available to accompany the framework. The paper discusses the application of the family of community-centred approaches as a flexible planning tool for health promotion practice and its potential to be used as a framework for organizing and synthesizing evidence from a range of participatory methods.


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Investment for health and well-being: a review of the social return on investment from public health policies to support implementing the Sustainable Development Goals by building on Health 2020 - WHO

Investment for health and well-being: a review of the social return on investment from public health policies to support implementing the Sustainable Development Goals by building on Health 2020 - WHO | Co-creation in health |


Governments across the WHO European Region need to take urgent action to address the growing public health, inequality, economic and environmental challenges in order to achieve sustainable development (meeting current needs without compromising the ability of future generations to meet their own needs) and to ensure health and well-being for present and future generations. Based on a scoping review, this report concludes that current investment policies and practices (doing business as usual) are unsustainable, with high costs to individuals, families, communities, societies, the economy and the planet. Investment in public health policies that are based on values and evidence provides effective and efficient, inclusive and innovative solutions that can drive social, economic and environmental sustainability. Investing for health and well-being is a driver and an enabler of sustainable development, and vice versa, and it empowers people to achieve the highest attainable standard of health for all. here to edit the content

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Promozione del patient engagement in ambito clinico-assistenziale per le malattie croniche: raccomandazioni dalla prima conferenza di consenso italiana - Recenti Progressi in Medicina 

Promozione del patient engagement in ambito clinico-assistenziale per le malattie croniche: raccomandazioni dalla prima conferenza di consenso italiana - Recenti Progressi in Medicina  | Co-creation in health |

Riassunto. Il concetto di patient engagement ha assunto crescente attenzione in sanità. Gli ultimi decenni, infatti, hanno visto un viraggio profondo dei modelli di cura verso una sempre maggiore valorizzazione del ruolo della persona, vista come soggetto attivo ed “esperto” all’interno del processo clinico-assistenziale. D’altro canto, i sistemi sanitari si trovano a interloquire con persone che esprimono il desiderio di avere un ruolo più attivo in tutte le fasi del percorso sanitario e di conoscere in maniera approfondita tutte le possibili opzioni di trattamento, i relativi vantaggi e i rischi. Tuttavia, sebbene i ricercatori e i clinici siano d’accordo circa della promozione del patient engagement, a oggi manca un consenso circa le strategie e gli strumenti più idonei per il raggiungimento di questo obiettivo. Le prospettive dei pazienti e degli operatori sanitari sui fattori che possono sostenere o, per contro, ostacolare il patient engagement non sono state ancora sufficientemente studiate e, attualmente, non esistono chiare raccomandazioni sugli interventi più efficaci. Sulla base di queste premesse, l’Università Cattolica di Milano e la Regione Lombardia, sotto la supervisione metodologica dell’Istituto Superiore di Sanità, hanno promosso una conferenza di consenso dal titolo: “Raccomandazioni per la promozione del patient engagement in ambito clinico-assistenziale per le malattie croniche”, che ha costituito un ambiente di scambio e di discussione tra esperti appartenenti a diversi contesti clinici e istituzionali e rappresentanti di associazioni di pazienti, al fine di identificare buone pratiche e strumenti efficaci per promuovere il patient engagement in ambito clinico-assistenziale per le malattie croniche.

Parole chiave. Consensus conference, patient engagement, raccomandazioni.

Recommandation for patient engagement promotion in care and cure for chronic conditions.

Summary. The concept of patient engagement is receiving a growing attention in the healthcare field. The last decades have seen a deep revision of care models in the aim of a greater acknowledge of the patient role, seen as an expert actor, in the healthcare process. On the other side, healthcare systems are facing a growing request for participation expressed by citizens and patients. People claim for being more involved in all the crucial turning point of their healthcare journey and of being better aware of their right and duties. They require a deeper knowledge about all the different therapeutic options with the related risks and advantages. However, although all the different stakeholders agree in considering patient engagement a pragmatic further then ethical priority, a shared consensus related to the strategies and instrument to promote has still to come. Patients and healthcare professional perspective about the factors that may hinder or sustain patient engagement still need to be further studied and at shared recommendations – about the programs better effective and efficient in promoting patient engagement – are still missed. Based on these premises, Università Cattolica of Milano and DG Welfare of Regione Lombardia, under the methodological supervision of the Istituto Superiore di Sanità, promoted a consesus conference entitled “Recommendation for promoting patient engagement in healthcare for chronic conditions”. This consensus conferences constituted the occasion of sharing and discussion among experts belonging to different clinical and institutional contexts as well as with representative of patients associations in order to identify good practices and effective tools to promote patient engagement in the care and cure process for chronic conditions.

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Workplace lessons: Millennials have a lot to teach us

Workplace lessons: Millennials have a lot to teach us | Co-creation in health |

Millennials are known for being caring, innovative and socially conscious. Since millennials are expected to comprise 75 percent of the workforce in just over seven years, older folks could benefit from learning from their perspectives, especially when it comes to workplace wellness.

Via Mike Rucker
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The Fundamental Elements Of Personal Branding

The Fundamental Elements Of Personal Branding | Co-creation in health |
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 |

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 |

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 |

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.

Via catherine cerisey
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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 |

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 |

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”;

  •  “93% of Patient Advocacy Groups Included in FDA Funding Discussions Receive $ from Pharma”;

  • “Patient Advocacy Groups with Funding & Form Letter from @PhRMA Oppose Nevada Legislation”;
  • “More Than Two-thirds of Patient Advocacy Groups Receive Industry Funding”;

Via Pharma Guy
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"La stanca umanità del mito. La Grecia di Ghiannis Ritsos"  Oreste - UOMINI E PROFETI con Moni Ovadia

"La stanca umanità del mito. La Grecia di Ghiannis Ritsos"  Oreste -  UOMINI E PROFETI con Moni Ovadia | Co-creation in health |
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The dialectic of human development - Pierre Levy

The dialectic of human development - Pierre Levy | Co-creation in health |

The algorithmic medium

Before the algorithmic medium was the typographical medium (printing press, broadcasting) that industrialized and automated the reproductionof information. In the new algorithmic medium, information is, de facto,ubiquitous and automation now concentrates on the transformation of information.

The algorithmic medium is built from three interdependent components: the Web as a universal database (big data), the Internet as a universal computer (cloud), and the algorithms in the hands of people.

IEML (the Information Economy MetaLanguage) has been designed to exploit the full potential of the new algorithmic medium.

IEML, who and what is it for?

It would have been impossible to have designed IEML before the automatic-computing era and, a fortiori, to implement and use it. IEML was designed for digital natives, and built to take advantage of the new pervasive social computing supported by big data, the cloud and open algorithms.

IEML is a language

IEML is an artificial language that has the expressive power of any natural language (like English, French, Russian, Arabic, etc.). In other words, you can say in IEML whatever you want and its opposite, with varying degrees of precision.

IEML is an inter-linguistic semantic code

We can describe IEML as a sort of pivot language. Its reading/writing interface pops up in the the natural language that you want with an IEML text that self-translates in that specific language.

IEML is a semantic metadata system

IEML was also designed as a tagging system supporting semantic interoperability. Its main use is data categorization. As a universal system addressing concepts, IEML can complement the universal addressing of data on the Web and of processors on the Internet.

IEML is a programming language

An IEML text programs the construction of a semantic network in natural languages and it computes its relations and its semantic differences with other texts.

IEML is a symbolic system

As with any other symbolic systems, IEML is a result from the interaction of three interdependent layers of linguistic complexity: a syntax, semantics and pragmatics.


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Pierre Levy: From deep learning to deep meaning

Pierre Levy: From deep learning to deep meaning | Co-creation in health |
I put forward in this paper a vision for a new generation of cloud-based public communication service designed to foster reflexive collective intelligence. I begin with a description of the current situation, including the huge power and social shortcomings of platforms like Google, Apple, Facebook, Amazon, Microsoft, Alibaba, Baidu, etc. Contrasting with the practice of these tech giants, I reassert the values that are direly needed at the foundation of any future global public sphere: openness, transparency and commonality. But such ethical and practical guidelines are probably not powerful enough to help us crossing a new threshold in collective intelligence. Only a disruptive innovation in cognitive computing will do the trick. That’s why I introduce “deep meaning” a new research program in artificial intelligence, based on the Information Economy  MetaLanguage (IEML). I conclude this paper by evoking possible bootstrapping scenarii for the new public platform.
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Dark chocolate is now a health food. The Mars company has sponsored hundreds of scientific studies to show cocoa is good for you.

Dark chocolate is now a health food. The Mars company has sponsored hundreds of scientific studies to show cocoa is good for you. | Co-creation in health |

The Mars company has sponsored hundreds of scientific studies to show cocoa is good for you.

A year after James Cadbury, the 30-something great-great-great-grandson of the British chocolatier John Cadbury, launched his luxury cocoa startup in 2016, he introduced an avocado chocolate bar.

Cadbury Jr.’s newest confection loaded just about every buzzy health trend into a fresh green-and-white package: vegan, ethically sourced, organic dark chocolate and creamy, superfood avocado. The company promised to deliver the nutrition of avocados — in a chocolate bar. Journalists were dazzled.

Wait, what? Make no mistake: This vegan avocado chocolate bar is candy. With nearly 600 calories and 43 grams of fat per 100-gram serving, the bar packs more fat and calories than Cadbury Dairy Milk, and just a little less sugar.

So how in the world could a chocolate bar be convincingly sold as a health food? You can thank a decades-long effort by the chocolate industry.

Over the past 30 years, food companies like Nestlé, MarsBarry Callebaut, and Hershey’s— among the world’s biggest producers of chocolate — have poured millions of dollars into scientific studies and research grants that support cocoa science.

Industry funding in nutrition science is not uncommon — grape juice makers and walnut growers sponsor studies showing these foods improve driving performance or cut diabetes risk. But Big Chocolate’s foray into nutrition research is a great case study in how industry can steer the scientific agenda — and some of the best minds in academia — toward studies that will ultimately benefit their bottom line, and not necessarily public health.

Here at Vox, we examined 100 Mars-funded health studies, and found they overwhelmingly drew glowing conclusions about cocoa and chocolate — promoting everything from chocolate’s heart health benefits to cocoa’s ability to fight disease. This research — and the media hype it inevitably attracts — has yielded a clear shift in the public perception of the products.

“Mars and [other chocolate companies] made a conscious decision to invest in science to transform the image of their product from a treat to a health food,” said New York University nutrition researcher Marion Nestle (no relation to the chocolate maker). “You can now sit there with your [chocolate bar] and say I’m getting my flavonoids.”

Amid a historic obesity epidemic, this new niche of nutrition science has helped build a solid aura of health around chocolate — and grow consumer demand. Chocolate retail sales in the US have risen from $14.2 billion in 2007 to $18.9 billion in 2017, the market research group Euromonitor International found, at a time when candy sales overall have been waning.

Big Chocolate’s investment in health science was a marketing masterstroke, catapulting dark chocolate into the superfood realm along with red wine, blueberries, and avocados — and helping to sell more candy.

Health-conscious consumers now increasingly seek out “premium” dark and gourmet chocolate, Euromonitor found, the success of which “stems partially from the health benefits associated with a higher cocoa content.”

But despite the industry effort to date, cocoa still has never been proven to carry any long-term health benefits. And when it’s delivered with a big dose of fat and sugar, any potential health perks are very quickly outweighed by chocolate’s potential harm to the waistline.

That’s something consumers all too easily forget in the face of delights like the vegan avocado chocolate bar.

How Mars helped turn chocolate into a heart healthy snack

In 1982, Mars Inc. — the company that has brought us M&M's, Snickers, and Twix — established the Mars Center for Cocoa Health Science in Brazil to study, in part, the biology of cocoa and its impact on human health.

Since then, mainly through the company’s scientific arm Mars Symbioscience, established in 2005, it has flooded journals with more than 140 peer-reviewed scientific papers.

Mars’ initial focus on studying the health benefits of chocolate has shifted to studying a group of compounds called flavanols. Flavanols are micronutrients found in many fruits and vegetables, including cocoa. These “phyto” — or plant-derived — chemicals have antioxidant properties and seem to promote vascular health (more on that later). Researchers suspected flavanols might be one of the reasons fruits and vegetables are so good for the body.

Companies selling flavanol-rich products have been on a quest to find out what flavanols do — and how they can be hyped. One of the earliest Mars papers, published in the Lancet,demonstrated that chocolate was a great source, even compared to flavanol-rich tea. “As a result,” the candy company claims on its website, “Mars started a research program to identify and isolate flavanols from cocoa, and to use these cocoa flavanols in the study of human health benefits.”

In addition to the science Mars generates, the company has also endowed a chair in nutrition science at the University of California Davis, and sponsored research conferences that focus on subjects like “The Potential Use of Cocoa Flavanols in Preventing Cardiac and Renal Disease.”

To find out what kind of conclusions Mars-sponsored studies come to, Vox searched the health literature and identified 100 original cocoa health studies funded or supported by the chocolate maker over the past two decades. (We also found dozens more Mars-supported cocoa studies that weren’t health-related and systematic reviews of the research evidence.)

Among the findings in the Mars-sponsored health studies: Regularly eating cocoa flavanols could boost mood and cognitive performance, dark chocolate improves blood flow, cocoa might be useful for treating immune disorders, and both cocoa powder and dark chocolate can have a “favorable effect” on cardiovascular disease risk. The institutions that received Mars support stretch across the US and all over the world — from UC Davis to Harvard and Georgetown universities, from Heinrich Heine University in Düsseldorf, Germany, to the University of Buenos Aires, Argentina.

All told, nearly every one of the studies came to positive and favorable conclusions about cocoa or chocolate.

Javier Zarracina/Vox
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MoiPatient : jamais la parole des patient-e-s n'a été aussi importante  #esante #hcsmeufr #epatient #moipatient

MoiPatient : jamais la parole des patient-e-s n'a été aussi importante  #esante #hcsmeufr #epatient #moipatient | Co-creation in health |

Afin de mieux comprendre le ressenti et les besoins des patient-e-s et de mieux y répondre, la recherche médicale doit évoluer, pour les impliquer directement : elle doit devenir participative.

La prise en compte des savoirs et des expériences des patient-e-s sera une des prochaines grandes révolutions de la médecine et de la démocratie en santé : elle permettra que leurs voix et la réalité de leurs vécus soient enfin entendues;

Tel est l'objectif de la plateforme, qui sera lancée par Renaloo dans quelques mois (1). 


MoiPatient vous proposera de :

- Contribuer à la production de nouveaux savoirs, issus directement des patient-e-s et de leurs proches, centrés sur votre expérience et votre vécu

- Participer à l’évaluation et des évolutions de notre système de santé, en témoignant de votre vie avec la maladie et les traitements et en faisant entendre votre voix sur les questions qui vous préoccupent


En pratique

MoiPatient vous permettra de contribuer à l’amélioration des connaissances et de la qualité des soins, en apportant vos propres données (dont vous resterez propriétaire) sur votre santé, vos traitements, votre relation au système de soins, l’accès aux droits, l’impact de votre pathologie sur votre vie quotidienne ou celle de votre entourage, etc.


Imaginer la recherche de demain

Vous pourrez dialoguer directement avec des chercheurs, participer à la définition des priorités de recherche et proposer des thématiques d’étude, en fonction de vos préoccupations.


Participer à des études

Enfin, MoiPatient vous permettra de participer, selon vos souhaits, à toutes sortes d’études (épidémiologiques, cliniques, organisationnelles, sociologiques, économiques, etc.), réalisées par des acteurs publics, privés, ou institutionnels, après validation des projets par un comité « d’intérêt des patients ».

Vous pourrez choisir les thématiques sur lesquelles vous souhaitez être sollicité-e. 
Vous serez informé-e-s des promoteurs et des finalités de chaque enquête et vous pourrez bien entendu décider d’y participer ou non.


Les données par et pour les patient-e-s

A l’heure où les données de santé font l’objet de toutes les convoitises, MoiPatient a pour ambition d’apporter à ses participants toutes les garanties, éthiques, de sécurité et de confidentialité sur les usages et la protection de leurs données (2). Elles seront utilisées de façon anonyme et exclusivement au service de l’intérêt collectif des patients, conformément aux valeurs de Renaloo (1), responsable du traitement des données.


Nous nous engageons à vous tenir systématiquement informé-e-s du déroulement et des résultats de toutes les études auxquelles vous aurez contribué.


Nous vous proposons dès à présent de participer à une première enquête, qui est nécessaire pour identifier et mieux connaître les patient-e-s et proches qui pourront contribuer à cette plateforme et donc à des études à venir.


MoiPatient, c’est l’opportunité que nos points-de-vue et nos expériences comptent et que nos voix soient entendues. Plus nous serons nombreux-ses, plus nous serons écouté-e-s, mieux nous pourrons agir pour une meilleure médecine, ensemble.


Via Giovanna Marsico, Lionel Reichardt / le Pharmageek, Géraldine GOULINET FITE
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How online patient portals are transforming health care

How online patient portals are transforming health care | Co-creation in health |
Patient portals — secure websites that give people access to medical information — now let you easily check doctor visit summaries, test results, prescriptions, and other personal data, all with a few clicks of a mouse. Some patient portals also give you the ability to directly email questions to your doctor, fill out necessary forms, pay bills, or schedule future appointments. Convenient!More and more health-care providers are beginning to offer patient portals. The Office of the National Coordinator for Health Information Technology (ONC), which is part of the U.S. Department of Health and Human Services (HHS), reports that 64 percent of hospitals had some type of online patient portal in 2014. Another survey found that, in 2016, 58 percent of health-care providers were offering portals.
Via Alex Butler
Denise Silber's curator insight, December 11, 5:16 AM
How inclusive is the data in that portal? (What % of the patient's data does it represent?).
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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 |

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 |

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 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.

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 |

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 |
“Worse Than Big Tobacco”: How Big Pharma Fuels the Opioid Epidemic

By Lynn Parramore


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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