Co-creation in health
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7 Myths of Patient Portals, Access & Engagement Infographic

7 Myths of Patient Portals, Access & Engagement Infographic | Co-creation in health | Scoop.it
Infographic created by Carestream highlights what patients are looking for in terms of medical images, patient portals, and online access to those images.
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Co-creation in health
E-citizens, e-patients, communities in shaping e-health, health literacy.
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Why Physicians Need ‘Right Compassion’

Why Physicians Need ‘Right Compassion’ | Co-creation in health | Scoop.it
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
NY Time  Opinion Pages
 

image

http://bit.ly/dP1O76


Via Edwin Rutsch
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Inteligencia Colectiva para Educadores. Conferencia de Pierre Lévy

http://www.ibertic.org Tenemos que comprender que la inteligencia colectiva existe desde siempre y la especie humana es un ejemplo maravilloso de ello. Per

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Cancer On Facebook, A Patient's Perspective

Cancer On Facebook, A Patient's Perspective | Co-creation in health | Scoop.it

You can’t be sick, you’re fat. You don’t look like your dying. You still have hair. Oh come on, you’ve been dying for years. It can’t be that bad, it’s not like you’re dying tomorrow. At least you have a few years. Stop complaining. Others have it worse. At least you’ve lived your life.”

This is the crap crowding my (Facebook) news feed. Watching my friends hear well meaning people say insensitive things because they lack the knowledge of what they go through.

So, I ask you, are there different degrees of terminal diagnosis? Is one person who manages to live four years into a diagnosis less allowed to be afraid than someone who doesn’t get diagnosed before their cancer has metastasized to their bones, brain, liver, kidneys or another organ? Are my friends supposed to be less afraid because they managed to have positive results with certain cocktails of drugs, while others have stopped responding?

I wonder if you truly know what it’s like to suddenly feel as if your friends or family have become numb to your plight, and the fears you face on a daily basis. Has society really become so desensitized that we view cancer patients that have fought for years as lucky, and they should stop voicing their fears? Is the woman of 30 with young children at home, who has stage four metastatic breast cancer more a tragedy then the 50, or even 70 year old woman with the same diagnosis? And are we truly compassionate if we are distinguishing them that way?

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Patient education, nudge, and manipulation: defining the ethical conditions of the person-centered model of care

Patient education, nudge, and manipulation: defining the ethical conditions of the person-centered model of care | Co-creation in health | Scoop.it
Abstract: Patient education (PE) is expected to help patients with a chronic disease to manage their lives and give them the possibility of adopting, in an appropriate manner, beneficial changes in health behaviors that are prescribed by their physicians. It is aimed at delineating, agreeing on, and implementing a patient’s personal action plan and is therefore an essential constituent of the person-centered model of care. The aim of this article is to examine the idea that PE may sometimes be a manipulation that is organized for the good of patients in a paternalistic framework. Theoretically, PE differs from manipulation by addressing the reflective intelligence of patients in full light and helping them make autonomous choices. In this article, we examined some analogies between PE and nudge (ie, techniques used to push people to make good choices by organizing their environment). This analysis suggests that PE is not always as transparent and reflective as it is supposed to be and that unmasking these issues may be useful for improving the ethical quality of educational practice that must be performed in a framework of a trusting patient–doctor relationship. Under this condition, PE may sometimes represent a form of persuasion without being accused of patient deception and manipulation: trust is therefore the core of the person-centered model of care.

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Internet Health Information Seeking and the Patient-Physician Relationship: A Systematic Review

Internet Health Information Seeking and the Patient-Physician Relationship: A Systematic Review | Co-creation in health | Scoop.it

Background: With online health information becoming increasingly popular among patients, concerns have been raised about the impact of patients’ Internet health information-seeking behavior on their relationship with physicians. Therefore, it is pertinent to understand the influence of online health information on the patient-physician relationship.

Objective: Our objective was to systematically review existing research on patients’ Internet health information seeking and its influence on the patient-physician relationship.

Methods: We systematically searched PubMed and key medical informatics, information systems, and communication science journals covering the period of 2000 to 2015. Empirical articles that were in English were included. We analyzed the content covering themes in 2 broad categories: factors affecting patients’ discussion of online findings during consultations and implications for the patient-physician relationship.

Results: We identified 18 articles that met the inclusion criteria and the quality requirement for the review. The articles revealed barriers, facilitators, and demographic factors that influence patients’ disclosure of online health information during consultations and the different mechanisms patients use to reveal these findings. Our review also showed the mechanisms in which online information could influence patients’ relationship with their physicians.

Conclusions: Results of this review contribute to the understanding of the patient-physician relationship of Internet-informed patients. Our main findings show that Internet health information seeking can improve the patient-physician relationship depending on whether the patient discusses the information with the physician and on their prior relationship. As patients have better access to health information through the Internet and expect to be more engaged in health decision making, traditional models of the patient-provider relationship and communication strategies must be revisited to adapt to this changing demographic.

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Imagination in narrative medicine 

Imagination in narrative medicine  | Co-creation in health | Scoop.it

Abstract

This article presents a qualitative study realized in the Children’s University Hospital of Parma, Italy, aimed at observing the effects of the fictional narrative in the emotions of the young patients. The results showed that, especially by means of projection, identification and symbolization, the imagination helps the children to elaborate in a positive way the bad emotions elicited by the experience of the disease and of the stay in hospital. Furthermore, the study was useful to the healthcare professionals in order to understand the emotive, cognitive and relational needs of the patients. We suggest the introduction of creative expression in the narrative medicine in addition to the autobiographical accounts, the questionnaires and the interviews in some particular care contexts.

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Norway just became the first country to offer the leading HIV prevention drug for free

Norway just became the first country to offer the leading HIV prevention drug for free | Co-creation in health | Scoop.it
If used properly, pre-exposure prophylaxis (PrEP) can stop transmission of the human immunodeficiency virus (HIV) with 90% effectiveness. Although men who have sex with men make up more than half of those infected with HIV in the United States, according to the Centers for Disease Control and Prevention (CDC), many are not aware of the benefits of PrEP. “Doctors have limited time with their patients, but with gay and bisexual male patients, physicians definitely need to make it a point to discuss HIV risks and whether PrEP is a good option,” Julia R. G. Raifman, ScD, a post-doctoral fellow in the Johns Hopkins Bloomberg School of Public Health’s Department of Epidemiology, said in a news release. - See more at: http://www.mdmag.com/medical-news/the-people-most-at-risk-for-hiv-dont-know-about-prep#sthash.Lb9XVPtY.dpuf
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5 IDEAS for a pedagogy of online learning | Tony Bates

5 IDEAS for a pedagogy of online learning | Tony Bates | Co-creation in health | Scoop.it

Tony Bates:

"This report provides some intriguing suggestions for designers of blended and online learning. As the report states:

The examples of initiatives discussed ….. may be used as inspiration for course teams, departments or institutions to explore innovative practices.

 

It is clear that universities are going to change, not just because technology is at last beginning to radically shake up how we design courses, but also because the needs of learners are changing. In the end, the value of any new online pedagogy will be judged by how well it helps meets these needs. This report provides many useful ideas and examples that should help stimulate such developments."


Via Dennis T OConnor, Peter Mellow
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Dennis T OConnor's curator insight, December 3, 2016 9:50 PM

This report was recommended by Tony Bates.  Enough said.

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How to Bring Real Competition to the Health Care Industry

Here’s the good news: Thanks to the Affordable Care Act, or Obamacare, more Americans have access to health care than ever before. The bad news? The care itself hasn’t improved much. Despite the hard work of dedicated providers, our health care system remains chaotic, unreliable, inefficient, and crushingly expensive.

There is no shortage of proposed solutions, many of which have appeared in these pages. But central to the best of them is the idea that health care needs more competition. In other sectors of the economy, competition improves quality and efficiency, spurs innovation, and drives down costs. Health care should be no exception.

 

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Too much alcohol – BVI conducting research

Too much alcohol – BVI conducting research | Co-creation in health | Scoop.it


The Ministry of Health and Social Development said it has set up a sub-committee to address alcohol and tobacco issues in the British Virgin Islands (BVI).

The
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Access to Medicine Index 2016

Access to Medicine Index 2016 | Co-creation in health | Scoop.it

The Access to Medicine Index analyses the top 20 research-based pharmaceutical companies on how they make medicines, vaccines and diagnostics more accessible in low- and middle-income countries.

2016 Access to Medicine Index Overall Ranking

In 2016 moderate progress is visible in the pharmaceutical industry’s efforts to improve access to medicine. GSK leads for the fifth time, ahead of Johnson & Johnson, Novartis and Merck KGaA.
Leaders see business rationale in access

GSK leads for the fifth time ahead of Johnson & Johnson, Novartis and Merck KGaA. Critically, these companies show needs-orientation, matching actions to externally identified priorities in the access agenda. For example, they invest in R&D for urgently needed products, even where commercial incentives are lacking. Their access strategies support commercial objectives, with clear business rationales.

Incremental improvements

Lower ranked companies have each improved in at least one measure, and withstood closer scrutiny: the 2016 Index used tougher measures than in 2014. Change by these companies has been incremental. Exceptions are Takeda, which launched a new access strategy and rose from 20th place, and Bayer, which lost ground as others improved.

In the top ten

Following the first four, the remaining companies in the top ten each show strength in at least one area, yet have room to deepen engagement in access to medicine. There have been two significant shifts in this group. Novo Nordisk falls to 10th place. Its solid access frame- work applies to few products (albeit those considered key for access). AstraZeneca joins the top ten, with an expanded access strategy and notable pricing practices.

Lowest rankings

Lagging furthest behind are Roche** and Astellas. Roche is less transparent than its peers, yet it advances in other measures, with new access initiatives and strong processes for ensuring compliance. While Astellas shows some improvements, such as a new pledge not to enforce IP rights in certain poor countries, these were not sufficient to avoid being overtaken.

See the website for more!

- Best practices

- Company records Cards

- Key findings

 etc.


Via rob halkes
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rob halkes's curator insight, November 22, 2016 10:28 AM

Just recently the Access to Medicine Index 2016 for Pharma Companies has been published!

See all and the download here

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Diabetes is no longer a rich-world disease

Diabetes is no longer a rich-world disease | Co-creation in health | Scoop.it

EVERY six seconds a person somewhere in the world dies as a consequence of diabetes, according to estimates by the International Diabetes Federation (IDF). In 2015 5m lives were lost to the disease, more than were claimed by AIDS, tuberculosis and malaria combined. Moreover, the toll is rising faster than forecasters have expected. Nearly half of these deaths are among people younger than 60. In parts of Africa, where the condition is much less likely to be diagnosed, that share is more than four-fifths.

The rise of diabetes has been misjudged repeatedly. In 1995 the World Health Organisation estimated that 135m 20- to 79-year-olds had diabetes, and that this figure would more than double in three decades. But reality outpaced this stark projection by a huge margin: just twelve years later the number of people with diabetes had already nearly doubled. Since then, the rise of diabetes has been so steep that prevalence closed in on projections even faster. In 2015, the estimated global prevalence had reached 8.8%, nearly double that in 1995. By 2040, the IDF reckons that a tenth of humanity will have the condition. Already, diabetes gobbles up 12% of health spending globally; in some countries, the share is as much as a fifth. 

 

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Medical error—the third leading cause of death in the US

Medical error is not included on death certificates or in rankings of cause of death. Martin Makary and Michael Daniel assess its contribution to mortality and call for better reporting

The annual list of the most common causes of death in the United States, compiled by the Centers for Disease Control and Prevention (CDC), informs public awareness and national research priorities each year. The list is created using death certificates filled out by physicians, funeral directors, medical examiners, and coroners. However, a major limitation of the death certificate is that it relies on assigning an International Classification of Disease (ICD) code to the cause of death.1 As a result, causes of death not associated with an ICD code, such as human and system factors, are not captured. The science of safety has matured to describe how communication breakdowns, diagnostic errors, poor judgment, and inadequate skill can directly result in patient harm and death. We analyzed the scientific literature on medical error to identify its contribution to US deaths in relation to causes listed by the CDC.2

Medical error has been defined as an unintended act (either of omission or commission) or one that does not achieve its intended outcome,3 the failure of a planned action to be completed as intended (an error of execution), the use of a wrong plan to achieve an aim (an error of planning),4 or a deviation from the process of care that may or may not cause harm to the patient.5 Patient harm from medical error can occur at the individual or system level. The taxonomy of errors is expanding to better categorize preventable factors and events.6 We focus on preventable lethal events to highlight the scale of potential for improvement.

The role of error can be complex. While …
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Public Health England Strategic Plan - GOV.UK

Public Health England Strategic Plan - GOV.UK | Co-creation in health | Scoop.it

The Public Health England (PHE) Strategic Plan sets out how the organisation intends to protect and improve the public’s health and reduce inequalities over the next 4 years. It also outlines actions PHE will take over the next year to achieve these aims and deliver its core functions.

It builds on the Department of Health’s Shared Delivery Plan, the NHS 5 Year Forward View, and From Evidence into Action. It confirms the role that PHE will continue to play in the health and care system, building on evidence, prioritising prevention and supporting local government and the NHS.

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This So-Called Natural Cure Can Cause Heart Attacks

This So-Called Natural Cure Can Cause Heart Attacks | Co-creation in health | Scoop.it

Drinking high-concentration hydrogen peroxide is a tactic sometimes promoted in alternative medicine circles as a so-called "natural cure," but nearly 300 people have been poisoned and five have died after trying it, according to a new paperpublished this week in the Annals of Emergency Medicine.

Dr. Benjamin Hatten, assistant professor of emergency medicine at the University of Colorado School of Medicine, used data from the National Poison Data System collected between 2001 and 2011 and looked specifically at poisonings from hydrogen peroxide solutions of 10% or more, with most cases involving concentrations of 30% to 40%. These formulas aren’t usually sold in drug stores, and are generally marketed for industrial or commercial purposes. But they’re also sold by some alternative health retailers and promoted as an ingredient in what’s sometimes referred to as “super water.”

“For people who follow these regimens, the instructions involve placing a dropper-full of high-concentration peroxide into a large quantity of water or another liquid, so it’s fairly diluted,” says Dr. Hatten. “People believe that it’s hyper-oxygenating, putting extra oxygen into your beverage, and that it somehow improves your health.”

 

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Cyberbullismo, si ricomincia dai minori

Cyberbullismo, si ricomincia dai minori | Co-creation in health | Scoop.it

Lo scorso 31 gennaio il Senato ha approvato il disegno di legge in materia di cyberbullismo.

Il testo segna, nella sostanza, un ritorno alle origini ovvero al disegno di legge originariamente proposto proprio in Senato – prima firmataria la Senatrice Elena Ferrara (PD) - esattamente due anni fa, il 27 gennaio 2014.

Si ritorna, opportunamente, ad un disegno di legge che mira a introdurre nell’Ordinamento un corpus di regole speciali che hanno l’ambizione di garantire – a prescindere da ogni valutazione sulla loro efficacia – una tutela rafforzata per i minori nella loro vita in digitale e ciò in particolare davanti ad un ventaglio, che per la verità resta amplissimo, di condotte suscettibili di ledere la loro identità e dignità personale.

Una scelta coraggiosa che impone il ritorno del disegno di legge alla Camera dei Deputati e che, dunque, considerata la fragilità della legislatura in corso, potrebbe condannare l’iniziativa al naufragio.

Ma si tratta di una scelta saggia, opportuna e doverosa che consente di fare tabula rasa dell’interminabile serie di emendamenti, ritocchi e correzione che, nel suo primo passaggio alla Camera dei Deputati, avevano snaturato profondamente il disegno di legge sino a trasformarlo in una sorta di legge marziale per i crimini online, uno zibaldone di idee e strumenti confusi, ambigui e poco efficaci.

Il Senato ha rimesso ordine nelle originarie buone intenzioni, ha rimesso in fila le vere priorità e segnato una via.

Non è il miglior disegno di legge possibile – benché scriverne uno in una materia tanto delicata e complessa è operazione estremamente complessa – ma è un’iniziativa legislativa che torna ad essere coerente, ferma, puntuale.

E onestà intellettuale impone di darne atto con la stessa convinzione e determinazione con la quale, in agosto, si è attaccato e criticato duramente il disegno di legge uscito dalla Camera dei Deputati.

I dubbi, almeno alcuni, restano.

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HCV e nuovi farmaci: no a screening di popolazione, sì a misure di prevenzione - di Alberto Donzelli

HCV e nuovi farmaci: no a screening di popolazione, sì a misure di prevenzione - di Alberto Donzelli | Co-creation in health | Scoop.it

Prevenzione e cure non farmacologiche
... Per finire, lasciar passare il messaggio che le uniche opzioni per gli infetti da HCV siano “attendere un peggioramento o pagare in proprio” (19) fa l’interesse degli oligopoli farmaceutici e ne rafforza il potere contrattuale, creando fortissime pressioni sui decisori per distorcere valutazioni più razionali di costo-opportunità. E crea allarmismo e disperazione tra i pazienti con epatopatie lievi, o semplici infettati in condizione non evolutiva, concentrati su uno solo degli strumenti disponibili, che scaricano la frustrazione svalutando il SSN, a favore di sbocchi assicurativi presentati come (illusorie) soluzioni. ....

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Professor Manuel Castells: Communication, Power and the State in the Network Society 

Professor Manuel Castells: Communication, Power and the State in the Network Society  | Co-creation in health | Scoop.it

Lecture 1: Communication, Power and the State in the Network Society

Power in the network society is exercised through networks. There are four different forms of power under these social and technological conditions:

  1. Networking Power: the power of the actors and organizations included in the networks that constitute the core of the global network society over human collectives and individuals who are not included in these global networks.
  2. Network Power: the power resulting from the standards required to coordinate social interaction in the networks. In this case, power is exercised not by exclusion from the networks but by the imposition of the rules of inclusion.
  3. Networked Power: the power of social actors over other social actors in the network. The forms and processes of networked power are specific to each network.
  4. Network-making Power: the power to program specific networks according to the interests and values of the programmers, and the power to switch different networks following the strategic alliances between the dominant actors of various networks

Counterpower is exercised in the network society by fighting to change the programs of specific networks and by the effort to disrupt the switches that reflect dominant interests and replace them with alternative switches between networks. Actors are humans, but humans are organized in networks. Human networks act on networks via the programming and switching of organizational networks. In the network society, power and counterpower aim fundamentally at influencing the neural networks in the human mind by using mass communication networks and mass self-communication networks.


Via Pierre Levy
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Pierre Levy's curator insight, January 18, 12:07 PM

Video by Manuel Castells about communication and power

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Conflicting health information: prevalence, causes and effects

Conflicting health information: prevalence, causes and effects | Co-creation in health | Scoop.it

Abstract

Conflicting health information is increasing in amount and visibility, as evidenced most recently by the controversy surrounding the risks and benefits of childhood vaccinations. The mechanisms through which conflicting information affects individuals are poorly understood; thus, we are unprepared to help people process conflicting information when making important health decisions. In this viewpoint article, we describe this problem, summarize insights from the existing literature on the prevalence and effects of conflicting health information, and identify important knowledge gaps. We propose a working definition of conflicting health information and describe a conceptual typology to guide future research in this area. The typology classifies conflicting information according to four fundamental dimensions: the substantive issue under conflict, the number of conflicting sources (multiplicity), the degree of evidence heterogeneity and the degree of temporal inconsistency.

 

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Innovating Pedagogy 2016 | Open University Innovation Report #5

Innovating Pedagogy 2016 | Open University Innovation Report #5 | Co-creation in health | Scoop.it

The series of reports explores new forms of teaching, learning and assessment for an interactive world, to guide teachers and policy makers in productive innovation.

View the 2016 Innovating Pedagogy report

This fifth report, produced in collaboration with the Learning Sciences Lab at the National Institute of Education, Singapore, proposes ten innovations that are already in currency but have not yet had a profound influence on education.


Via Pierre Levy
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Face au cancer, 3 patients témoignent de leur combat contre la maladie 

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Giving Patients an Active Role in Their Health Care

As payment and care delivery models shift in the United States from episodic, fee-for-service care toward population health and value-based reimbursement, health care leaders are focused more than ever on patient engagement as a key to driving down costs and improving outcomes. And yet, as so many of us know who have attempted to manage our own care or tend to sick family members, the U.S. health care system rarely feels like it’s been set up to help us succeed.

What’s needed is a fundamental redesign of the patient’s role — from that of a passive recipient of care to an active participant charged with defined responsibilities, equipped to dispatch them, and accountable for the results. In other words, we need to view the patient’s role as a job and then design that job in such a way as to drive the best health outcomes possible.

 

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THE APPLICATION OF AN INTEGRATED MODEL OF PARTNERSHIP- PATIENT IN THE PROFESSIONALS OF THE HEALTH TRAINING: TOWARDS NEW ONE HUMANIST PARADIGM AND ETHICS OF CO-CONSTRUCTION KNOWLEDGES IN HEALTH]...

The Virtual Health Library is a collection of scientific and technical information sources in health organized, and stored in electronic format in the countries of the Region of Latin America and the Caribbean, universally accessible on the...
Via Giovanna Marsico
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Big Soda’s Balance Calories Initiative: Rigged Marketing or Public Health Promotion?

Big Soda’s Balance Calories Initiative: Rigged Marketing or Public Health Promotion? | Co-creation in health | Scoop.it
Don't listen to those pesky public health advocates talking about soda warning labels and soda taxes. Big Soda can solve the world's chronic disease crisis on its own. Sure, its products and marketing have contributed to unprecedented rates of Type 2 diabetes, heart disease and non-alcoholic fatty liver disease, but Big Soda has pledged to reduce the…
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More states are considering laws granting the terminally ill the right to die

More states are considering laws granting the terminally ill the right to die | Co-creation in health | Scoop.it
Medical associations are rethinking their opposition to laws modelled on Oregon’s Death with Dignity act

ON OCTOBER 5th the health committee of Washington, DC’s state council will vote on a Dignity in Dying Act brought forward by one of its Democratic members, Mary Cheh. Like many proposed doctor-assisted-dying laws debated across America in the past year, it is modelled on that of Oregon, which in 1997 became the first American state to make doctor-assisted dying legal in some circumstances. It allows terminally ill patients whom doctors expect to live no more than six months to be prescribed life-ending medicine, subject to checks of mental health and capacity. Four other states have since followed, most recently California, where a doctor-assisted-dying law came into force in June.

If DC’s proposal passes in the committee—as it is expected to, by a three-to-two margin—it will go to a whole-council vote. According to Ms Cheh’s calculations, it has “way more than enough” support to pass there, too. It would then arrive on the desk of Washington DC’s mayor, Muriel Bowser. What happens after that is unclear. Her office would not say whether she supported the principle of offering the terminally ill help to die, nor what she thought of the specific legislation under consideration.

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Social media for Doctors

Social media For The pediatric surgeon Sameh Shehata Egypt

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