Co-creation in health
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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
 

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Via Edwin Rutsch
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How to read and understand a scientific paper: a guide for non-scientists - Jennifer Raff

How to read and understand a scientific paper: a guide for non-scientists - Jennifer Raff | Co-creation in health | Scoop.it

From vaccinations to climate change, getting science wrong has very real consequences. But journal articles, a primary way science is communicated in academia, are a different format to newspaper articles or blogs and require a level of skill and undoubtedly a greater amount of patience. Here Jennifer Raff has prepared a helpful guide for non-scientists on how to read a scientific paper. These steps and tips will be useful to anyone interested in the presentation of scientific findings and raise important points for scientists to consider with their own writing practice.

My post, The truth about vaccinations: Your physician knows more than the University of Google sparked a very lively discussion, with comments from several people trying to persuade me (and the other readers) that their paper disproved everything that I’d been saying. While I encourage you to go read the comments and contribute your own, here I want to focus on the much larger issue that this debate raised: what constitutes scientific authority?

It’s not just a fun academic problem. Getting the science wrong has very real consequences. For example, when a community doesn’t vaccinate children because they’re afraid of “toxins” and think that prayer (or diet, exercise, and “clean living”) is enough to prevent infection, outbreaks happen.

“Be skeptical. But when you get proof, accept proof.” –Michael Specter

What constitutes enough proof? Obviously everyone has a different answer to that question. But to form a truly educated opinion on a scientific subject, you need to become familiar with current research in that field. And to do that, you have to read the “primary research literature” (often just called “the literature”). You might have tried to read scientific papers before and been frustrated by the dense, stilted writing and the unfamiliar jargon. I remember feeling this way!  Reading and understanding research papers is a skill which every single doctor and scientist has had to learn during graduate school.  You can learn it too, but like any skill it takes patience and practice.

 

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Co-creation can foster synergy. Collaborative groups often fail to generate any new solution to the problem

Co-creation can foster synergy. Collaborative groups often fail to generate any new solution to the problem | Co-creation in health | Scoop.it

How can we address social, environmental, political and health problems that are too big and too complex for any single person, organization or institution to solve, or even to budge? How can we pool our wisdom and work collaboratively toward purposes that are larger than ourselves?

In theory at least, co-creation generates innovative solutions that transcend what would otherwise be produced by the participants acting on their own. In other words, co-creation can foster synergy.

To maximize synergy, a co-creative group should include participants who understand the problem from all the relevant perspectives. The more complex the problem, the greater the number and diversity of stakeholders who should be included in the process. A broader range of perspectives and ways of thinking allows for a richer and more comprehensive analysis of the problem, as well as more innovative solutions that address more of the underlying factors.

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 Doctor, Don't Give Up on Me! Should a Doctor Decide When a Patient Has Had Enough Care?

 Doctor, Don't Give Up on Me! Should a Doctor Decide When a Patient Has Had Enough Care? | Co-creation in health | Scoop.it

What makes physicians unique in our society is that they deal in matters of life and death, with a mission to save lives.

But when, if ever, should this mission wind down? Should a doctor back off from aggressive medical care when patients appear to be nearing death's door? Who should make this decision? The doctor? The patient? The patient's family, if the patient isn't able to? Society, because providing "heroic" care consumes costly—and finite—resources that might be more rationally or humanely used elsewhere?

 

What if a patient does not have—or has even explicitly refused—a do-not-resuscitate (DNR) order, even though he may be in his 80s and immobilized by, say, a stroke, or she may appear to be in a persistently vegetative state? Should the doctor overrule the patient's or the family's wishes to prolong the patient's life on the basis the doctor's views about the remaining value of that life—or lack of it?

A recent Medscape article explored the ethical, philosophical, legal, and economic implications of such difficult issues. It pointed out that although many doctors today believe they are overtreating patients at the brink of death, a significant minority of patients don't want their doctors to give up on them, and sometimes they are not as near the end as their doctors initially thought.

The article cited several cases—a woman in her 80s in cardiac arrest, an infant with severe hematoma, and a young man on life support after a totally debilitating stroke—who were given terminal prognoses but whose families refused to give up on them, and who not only survived their ordeals but then thrived.

The article pointed out that the use of DNRs varied widely among doctors from one hospital to another; that doctors often had good reasons to push for a DNR (for example, cardiopulmonary resuscitation in cardiac or respiratory arrest in a frail, elderly patient can break ribs and often doesn't work); but that families also had good reasons to fear a DNR (which can set loved ones up for poorer care).

Doctors often overrule patients' wishes on DNRs, the article reported, and many doctors take a patient's nonverbal assent to a DNR (by simply not disagreeing, the patient is taken to agree), raising ethical and possibly legal questions about whether physicians are obligated to provide care when care is considered futile. This in turn raises the question, considered futile by whom? A small physiologic improvement might seem sufficiently beneficial to the patient, for example, although not to the doctor.

Nor are doctors always on the side of withdrawing care. Many doctors are on record as defending a patient's right to live when it is the family that wants to pull the plug. One legal scholar divides states into "red light," "yellow light," and "green light" categories based on how much control they give doctors over futility decisions. Texas, the only green-light state, permits clinicians to stop life-sustaining care without consent, as long as they stay within medical standards and allow disputes to be decided by a hospital ethics committee. Yellow-light states offer doctors some rights. Red-light states offer few, if any, rights.

The article prompted dozens of physicians to offer comments. Many doctors were sympathetic to patients' desire to cling to life for as long as possible, but quite a few took the opposite view: that death was a normal part of life and should be accepted—even embraced—with dignity.

"All patients deserve the last say. After all, it's their life," an internist observed. And we all get only one. I've seen many miracles." Continue Reading

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Susan Sontag on Storytelling, What It Means to Be a Moral Human Being, and Her Advice to Writers

Susan Sontag on Storytelling, What It Means to Be a Moral Human Being, and Her Advice to Writers | Co-creation in health | Scoop.it

Susan Sontag spent a lifetime contemplating the role of writing in both the inner world of the writer and outer universe of readers, which we call culture — from her prolific essays and talks on the task of literature to her devastatingly beautiful letter to Borges to her decades of reflections on writing recorded in her diaries. But nowhere did she address the singular purpose of storytelling and the social responsibility of the writer with more piercing precision than in one of her last public appearances — a tremendous lecture on South African Nobel laureate Nadine Gordimer titled “At the Same Time: The Novelist and Moral Reasoning,” which Sontag delivered shortly before her death in 2004.

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Why Are We Discouraging Patients from Participating in Care? - MyIdealPtExp

Why Are We Discouraging Patients from Participating in Care? - MyIdealPtExp | Co-creation in health | Scoop.it
The team at My Ideal Patient Experience was surprised and disappointed to read a letter in The Washington Post written by Debra Zalvan, Vice President of Marketing at a health care firm focused on patient engagement.  In the letter, Ms Zalvan states quite clearly that she believes (and we can assume it is the position of her company too) that “patients don’t want to be equal partners with their health-care providers”, but rather, “they want their physicians to take the lead in patient-provider communication”. While this may be the case with some patients, our own personal and collective experience does not bear out Ms Zalvan’s assertions. 
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Cancro: troppa disparità nell’accesso alle cure

Cancro: troppa disparità nell’accesso alle cure | Co-creation in health | Scoop.it
Sessanta giorni in più rispetto alla Francia e più di trecento rispetto a Germania a Regno Unito. Quelli italiani devono essere molto più “pazienti” degli altri. I malati oncologici del nostro Paese sono costretti a lunghe attese per accedere ai trattamenti innovativi, con preoccupanti differenze regionali. E l’occasione di porre fine alle discriminazioni sul nostro territorio presentata dalla riforma costituzionale è andata persa. 
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How pharma companies can better understand patients | McKinsey & Company

How pharma companies can better understand patients | McKinsey & Company | Co-creation in health | Scoop.it

Consumers have access to more healthcare information than ever. Here’s how pharmaceutical companies can better understand the way people make decisions about their care.

Consider the following: a 25-year-old, healthy male notices he is developing itchy, scaly patches of skin. He has not experienced anything similar before, so he goes online to do some research. Soon, he finds photos and descriptions that seem to match his symptoms and decides he has psoriasis. He pores over content in patient forums and reads strong views on which medications work best. He then makes a doctor’s appointment, and when the physician prescribes a typical ointment, he asks to be prescribed an injectable biologic instead, even though the physician feels his case is mild and is unsure his insurance company will reimburse the biologic.

 


Via Bruno Demay, Lionel Reichardt / le Pharmageek
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The brain dictionary

Where exactly are the words in your head? Scientists have created an interactive map showing which brain areas respond to hearing different words. The map reveals how language is spread throughout the cortex and across both hemispheres, showing groups of words clustered together by meaning. The beautiful interactive model allows us to explore the complex organisation of the enormous dictionaries in our heads.
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Semantic Maps Revealed On The Cerebral Cortex

Semantic Maps Revealed On The Cerebral Cortex | Co-creation in health | Scoop.it
Scientists at the University of California, Berkeley have constructed a “semantic atlas” that shows in vivid colors and multiple dimensions how the human brain organizes language. The atlas identifies brain areas that respond to words that have similar meanings. The findings are based on a brain imaging study that recorded neural activity while study volunteers listened to stories from the Moth Radio Hour. They show that at least one-third of the brain’s cerebral cortex, including areas dedicated to high-level cognition, is involved in language processing. Notably, the study found that different people share similar language maps: “The similarity in semantic
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I rischi di un cittadino connesso senza cultura

I rischi di un cittadino connesso senza cultura | Co-creation in health | Scoop.it

L’innovazione tecnologica è da sempre un fattore strategico di cambiamento dei sistemi sociali e delle organizzazioni, ma senza una cultura della comunicazione, una visione sistemica della complessità e, a livello di decisore politico, politiche sociali in grado di innescare e supportare il cambiamento culturale, diventa un’innovazione mancata

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The 6 Things You Should Never Sacrifice for Your Job—No Matter What

The 6 Things You Should Never Sacrifice for Your Job—No Matter What | Co-creation in health | Scoop.it

The typical workday is long enough as it is, and technology is making it even longer. When you do finally get home from a full day at the office, your mobile phone rings off the hook, and emails drop into your inbox from people who expect immediate responses.

While most people claim to disconnect as soon as they get home, recent research says otherwise. A study conducted by the American Psychological Association found that more than 50% of us check work email before and after work hours, throughout the weekend, and even when we’re sick. Even worse, 44% of us check work email while on vacation.

 

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Revealed: scandal of Scotland's rich-poor life expectancy divide for women

Revealed: scandal of Scotland's rich-poor life expectancy divide for women | Co-creation in health | Scoop.it

Wealthy women in Scotland’s largest city are now living more than a decade longer than their poorer counterparts – and the gap is widening.

According to a new report, from the Glasgow Centre for Population Health,due to be released tomorrow, on health in Glasgow, the average life expectancy of affluent females is 85.2, while women living in the city's most deprived areas are only expected to reach 74.5.

The gap has increased from 8.1 to 10.7 years over a 15-year period - a finding described as "unacceptable" by anti-poverty campaigners who argue life expectancy should not depend on wealth or the lottery of where you are born and live.

NHS Greater Glasgow and Clyde (NHSGGC) said it is taking steps to improve health and quality of life throughout the city, while the Scottish Government said the report highlights the need to tackle the underlying causes of health inequality.

Peter Kelly, director of the Poverty Alliance, said: "It is unacceptable in 21st century Glasgow that the life expectancy between the richest and poorest remains so wide, and is in fact continuing to grow for women.

"We know that women are more likely to be in poverty than men, and there are many reasons for this including lower wages and a higher dependency on the social security system.

"The negative impact of poverty on health is well documented, and this research shows that we are still not making the progress we need to in this area. People's life expectancy should not rely on their postcode.

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malek's curator insight, April 23, 6:09 PM

Second version: growing disparities in wealth are leading to privileged treatment of the rich.

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Helping women take health into their own hands | Toronto Star

Helping women take health into their own hands | Toronto Star | Co-creation in health | Scoop.it

Accessing health information is as simple as keying a few search terms into your computer's browser. But can you trust the results — especially when it comes to women's health?

“There is a lot of unreliable information out there,” says Lili Shalev-Shawn, chief of communications and marketing at Women's College Hospital (WCH). And even if you search a credible online resource, Shalev-Shawn points out for women the information might not be as accurate as it should be.

“We know from research at Women's College Hospital and from other studies that women's health issues are not always taken into consideration when it comes to drug testing, clinical trials, treatment protocols and the like,” she says. “In fact, up until 1990, it wasn't a requirement to include women in such trials.”

That means even seemingly reliable health information does not necessarily take female physiology into consideration.

 

“Medical testing has historically been done on men,” says Shalev-Shawn, “so prescribing, for example, is based on men's physiology and doesn't take into account women's differences in body size, hormones and life stage — all of which can have an impact.”

 


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Pensiero Critico: le migliori lezioni sul "Pensiero Critico" presenti su TED-Ed - Critical Thinking Lessons | TED-Ed

Pensiero Critico: le migliori lezioni sul "Pensiero Critico" presenti su TED-Ed - Critical Thinking Lessons | TED-Ed | Co-creation in health | Scoop.it
34 video lezioni e indovinelli sul Pensiero Critico - da TED-Ed Lessons

Via Gianfranco Marini
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Gianfranco Marini's curator insight, May 21, 12:59 AM
In un post pubblicato il 20 maggio 2016 su Educational Technology and Mobile Learning viene segnalata una playlist che raccoglie 34 lezioni presenti su TED-Ed e dedicate al pensiero critico- Ho esplorato la Playlist che trovo molto interessante e utile per docenti e studenti di ogni età

PENSIERO CRITICO ORA PIU' CHE MAI 
Come ricorda il post di ET&ML il "pensiero critico" è forse una delle capacità più importanti tra quelle che vengono elencate come "abilità del XXI secolo" e lo è specialmente nel mondo della comunicazione digitale e del web. 

Qui infatti il fenomeno del sovraccarico informativo e cognitivo, potrebbe avere esiti nefasti e produrre il conformismo e l'idiozia di massa, qualora non fosse controbilanciato da una "cultura digitale" fondata sul pensiero critico. 

Una delle caratteristiche distintive più importanti del "Pensiero Critico" è infatti la capacità di vagliare l'informazione, soppesandola e valutandola, in modo da esercitare un'opera di filtraggio e selezione. 

LA RACCOLTA 
Come ricorda il post di ET&ML, il Pensiero Critico non è definibile in termini semplici, ma è uno strumento complesso per muoversi in una realtà complessa e comprende un insieme di capacità, competenze, abilità che a loro volta si suddividono e articolano in vari modi. 

Ciascuna delle lezioni dell'elenco è focalizzata solo su qualcuna di queste abilità e capacità. 
La raccolta comprende 34 video, per la maggior parte video lezioni di pochi minuti, in alcuni casi si tratta invece di conferenze di qualche decina di minuti. I temi affrontati sono i più diversi: 
1. indovinelli e enigmi da risolvere: l'indovinello della rana, il mistero del tempio, il dilemma di Einstein, 
2. lezioni sul pensiero critico: perché prendiamo decisioni irrazionali, 5 consigli sul pensiero critico, 
3. riflessioni filosofiche: il dilemma etico dell'auto senza autista, differenza tra legge e teoria scientifica, 
4. riflessioni di vario genere: che cos'è l'espressionismo astratto, Napoleone contro la storia, di che colore erano i dinosauri?

USARE I SOTTOTITOLI IN ITALIANO
Il principale problema nell'utilizzo di questi video potrebbe essere la lingua per chi, come me, non è in grado di comprendere molto bene l'inglese. Una soluzione efficace è quella di usare i sottotitoli. Tutte le lezioni sono pubblicate su YouTube, dunque sarà sufficiente cliccare in basso a destra sulle impostazioni
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Making evidence based medicine work for individual patients

Making evidence based medicine work for individual patients | Co-creation in health | Scoop.it

Margaret McCartney and colleagues argue that new models of evidence synthesis and shared decision making are needed to accelerate a move from guideline driven care to individualised care

A Google Scholar search using the term “evidence based medicine” identifies more than 1.8 million papers. Over more than two decades, evidence based medicine has rightfully become part of the fabric of modern clinical practice and has contributed to many advances in healthcare.

But many clinicians and patients have expressed dissatisfaction with the way evidence based medicine has been applied to individuals, especially in primary care.1 There is concern that guidelines intended to reduce variation and improve the quality of care have instead resulted in medicine becoming authoritarian and bureaucratic.2 Evidence generated from large populations has been distilled into large numbers of lengthy and technically complex guidelines. Guidelines in turn have been used to create financial incentive schemes such as the UK’s Quality and Outcomes Framework, whereby a substantial proportion of general practice income depends on achieving thresholds for drug therapy or surrogate outcomes in accordance with National Institute for Health and Care Excellence guidelines. Not only do these thresholds exceed the limits of the evidence for many people but they also encourage clinicians to ignore the need to elicit and respect the preferences and goals of patients.

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What Neuroscience Can Teach Us About Compassion

What Neuroscience Can Teach Us About Compassion | Co-creation in health | Scoop.it

Mounting evidence of the impact of contemplative practices like meditation (which we now know can, quite literally, rewire the brain) are finally bringing modern science up to speed with ancient wisdom.

Mindfulness and compassion — the practices of cultivating a focused awareness on the present moment, and extending a loving awareness to others — are part of every religion and wisdom tradition, and we’re at last beginning to understand the profound impact that they have on the brain, says psychiatrist and mindfulness expert Dr. Dan Siegel.

A pioneer in the field of interpersonal neurobiology and executive director of the Mindsight Institute, Siegel discussed the neuroscience of mindfulness and compassion during a keynote address to the Nalanda Institute for Contemplative Science’s Mind Science in Action Benefit Weekend earlier this month.

 

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Learning Chess at 40 - What I learned trying to keep up with my 4-year-old daughter at the royal game.  Issue 36: Aging - Nautilus

Learning Chess at 40 - What I learned trying to keep up with my 4-year-old daughter at the royal game.  Issue 36: Aging - Nautilus | Co-creation in health | Scoop.it
My 4-year-old daughter and I were deep into a game of checkers one day about three years ago when her eye drifted to a nearby table.

There, a black and white board bristled with far more interesting figures, like horses and castles. “What’s that?” she asked. “Chess,” I replied. “Can we play?” I nodded absently.


There was just one problem: I didn’t know how. I dimly remembered having learned the basic moves in elementary school, but it never stuck. This fact vaguely haunted me through my life; idle chessboards in hotel lobbies or puzzles in weekend newspaper supplements teased me like reproachful riddles.

And so I decided I would learn, if only so I could teach my daughter. The basic moves were easy enough to pick up—a few hours hunched over my smartphone at kids’ birthday parties or waiting in line at the grocery store. It soon became apparent, however, that I had no concept of the larger strategy. The chess literature was dauntingly huge, and achingly specific, with several-hundred-page tomes devoted to unpacking single openings.

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Empower patients to take ownership of their health (Wired UK)

Empower patients to take ownership of their health (Wired UK) | Co-creation in health | Scoop.it

The necessary technology to disrupt healthcare is already available. The challenge now is to empower patients to take ownership of their health.

For most patients in healthcare, medicine has changed very little in the past few decades. However, attending Singularity University's annual Exponential Medicine conference in San Diego is enough to make it clear that the necessary technology to disrupt healthcare is already available.

The challenge now, according to Singularity University co-founder Peter Diamandis, is to make that technology available to patients, empowering them to take ownership of their own health.  

WIRED talked to Diamandis about the Human Longevity Institute, the Qualcomm Tricorder X Prize and what exponential technologies mean for medicine.

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Jeff French's curator insight, May 18, 5:54 PM
power to the people
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Women in Leadership: Why It Matters

It’s no secret that women have historically faced greater barriers than men when it comes to fully participating in the economy.

Across geographies and income levels, disparities between men and women persist in the form of pay gaps, uneven opportunities for advancement, and unbalanced representation in important decision-making.

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How Australia is losing the health fight

How Australia is losing the health fight | Co-creation in health | Scoop.it

Imagine telling the good folk of 1990 that in the near future, we’d be redesigning hospitals to accommodate the influx of obese patients.

Or that almost all of our sporting legends would be contractually obliged to advertise alcohol. Or most kids would be driven less than a kilometre to and from school.

Twenty-five years ago, these things were unimaginable. Yet, in 2016, here we are.

One might rightly ask how Australia’s health got so bad in such a short time, why our children are growing out before they grow up, and why nine out of 10 of us will die from a preventable disease.

 

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Face au cancer, les inégalités sociales persistent

Face au cancer, les inégalités sociales persistent | Co-creation in health | Scoop.it
Le Monde.fr version mobile - Donner à chaque patient les mêmes chances de combattre la maladie constitue un enjeu des derniers plans de lutte. Un objectif pourtant loin d’être atteint.
Via Giovanna Marsico
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Felicità dei dipendenti, solo una moda?

Felicità dei dipendenti, solo una moda? | Co-creation in health | Scoop.it
I dirigenti insieme all’area HR si dovrebbero veramente occupare della felicità dei dipendenti?

Da un po’ di tempo si sente parlare spesso di felicità dei dipendenti, felicità nei luoghi di lavoro e anche di Chef Happyness Officer, il manager della felicità che le aziende dovrebbero assumere per rendere i dipendenti più produttivi e di cui abbiamo parlato qui.

Secondo il dr. John Sullivan, esperto di Risorse Umane di livello internazionale, parlare e occuparsi della felicità dei dipendenti è solo una tendenza del momento che distrae la divisione HR dall’obiettivo primario: aumentare la produttività dei dipendenti e rendere l’azienda più innovativa.

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10 Ways To Beat Stress

10 Ways To Beat Stress | Co-creation in health | Scoop.it

Stress has a funny way of sneaking up on you when you least expect it, but how you respond is only half the battle. The secret to winning the war against stress lies in what you do when you aren’t working (and presumably aren’t stressed).

While I have a hobby that I engage in regularly (surfing), it isn’t the antidote to stress you might think. Think about it: even if you have a hobby that you’re deeply passionate about, you aren’t going to spend more than 10% of your time outside of work doing it. It’s what you do with the other 90% that really matters.

You need structure to use this other 90% wisely. Otherwise, you’ll fall into bad habits that can magnify your stress, rather than alleviate it. I structure my time by religiously following 10 rules when I’m not working.

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The Littlest Chess Champions

The Littlest Chess Champions | Co-creation in health | Scoop.it
Chess is enjoying a boom in the New York area, much of it because schools have brought the game to very young players.
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EBPM

EBPM | Co-creation in health | Scoop.it

This page brings together my work on ‘evidence-based policymaking’, including a newly published book The Politics of Evidence-Based Policy Making (30% off with promo code PM16TWENTY valid until 30th April 2016), some journal articles, and many posts. Please scroll down to see the main argument and links to further reading (including a free pre-publication version of my book).

 

 

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