Co-creation in health
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Community Organizing and Community Building for Health and Welfare

Community Organizing and Community Building for Health and Welfare | Co-creation in health | Scoop.it
This is an important resource of great value for those studying public health, health education, and theory-based program planning. Minkler's new text offers insightful overviews, case examples, and a rich appendix of tools." 
—Rima Rudd, Harvard School of Public Health
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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
 

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http://bit.ly/dP1O76


Via Edwin Rutsch
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Conflict-of-Interest Rules Are Holding Back Medical Breakthroughs

Conflict-of-Interest Rules Are Holding Back Medical Breakthroughs | Co-creation in health | Scoop.it
Researchers and companies have to work together.

 

Few issues are more foundational to driving improvements in human health than creating productive, progressive relationships between clinical medicine and the biopharmaceutical industry. The big public health problems that humanity faces today — including Alzheimer’s disease, cancer, and metabolic and infectious disease — will not be solved by either sector working in a silo. But the interface between the two has never been more tense. Legitimate concerns over conflict of interest that have resulted in overly extreme preventative policies are a central cause. It is time for all parties to revisit those policies and replace them with rules that recognize both true conflicts and true confluences of interest. They are essential to forging the strong collaborations that are worthy of society’s trust.

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Top 10 Pharmaceutical Companies 2017

Top 10 Pharmaceutical Companies 2017 | Co-creation in health | Scoop.it
The global pharmaceutical market was estimated in USD 1.1 trillion in 2016. The global market is highly mature and consolidated. The top-10 pharmaceutical companies in this market had share of around 40% in 2016 and approximately 50% considering the top-15. A comparative analysis of the top-15 organizations was used to develop a ranking for these…

Via Dinesh Chindarkar, Lionel Reichardt / le Pharmageek
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Why nurses are the best teachers for medical students

Why nurses are the best teachers for medical students | Co-creation in health | Scoop.it

Medical schools would be wise to recognize what nurses can bring to the table when it comes to medical education. Students would benefit from more formal instruction by nurses. A nursing clinical rotation, in fact, could be the very solution that medical students need.

I approached my patient’s bedside and stared blankly at her urinary catheter. I simply had no idea what to do.

Sensing my uneasiness, my patient’s nurse offered to walk me through the procedure, step-by-step. Along the way, she answered my many questions.

 

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Is evidence-based medicine a form of microfascism?

Is evidence-based medicine a form of microfascism? | Co-creation in health | Scoop.it

My friend Nicholas Christakis recently Tweeted: “Critique of evidence- based medicine on grounds that it is exclusionary and ‘colonized’” providing a link to the critical article: http://www.ucl.ac.uk/Pharmacology/dc-bits/holmes-deconstruction-ebhc-06.pdf He added an NB to me, and the result was that I was a witness to a Twitter squall (not quite a storm). Most of the Tweeters were appalled by the article, some wondered if it was a spoof along the lines of the “conceptual penis,” a paper made up and recently published in a journal showing both, the authors argued, the emptiness of social science and the hopelessness of peer review.

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It’s Clinical Trials Day, and patients are driving change

It’s Clinical Trials Day, and patients are driving change | Co-creation in health | Scoop.it
PatientsLikeMe: Share your experiences with treatments. Find patients just like you. Learn from others who know. Join now!

 

Today is Clinical Trials Day – celebrated to bring more attention to public health and also to recognize the contribution of the patients and healthcare professionals who make clinical research possible. At PatientsLikeMe, it’s members who are changing the way clinical trials are designed.

Bringing the patient voice to clinical trials has long been part of the PatientsLikeMe mission. Jeremy Gilbert, Vice President, PLM Health and Paul Wicks, Ph.D., Vice President, Innovation, sat down with us last year to talk about the importance of putting patients at the center of drug discovery and development. Check out their Q&A here. Recently, Paul Wicks touched on the purpose behind the latest PatientsLikeMe study on clinical trial design involving the patient perspective, and why organizations need to work on improving their trial process:

“As researchers we know that clinical trials are the best tool we have for identifying new, safe, effective treatments. Patients know this, too, and they’re motivated to take part. But what this research tells us is that actually participating in a trial is not a fun experience; about as much fun as dealing with the worst airlines, banks, or utility companies, and we all know how that can be. This is a call to action to trial designers and sponsors to step up their game and understand that while patients volunteer out of altruism, a clinical trial still has to fit into their daily life and should create as little burden as possible if we want people to enroll and see it through to the end.”

-Paul Wicks

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Patient engagement tools bring consumer vibes to healthcare

Patient engagement tools bring consumer vibes to healthcare | Co-creation in health | Scoop.it
Technologies like CRM and telemedicine are among the patient engagement tools that bring healthcare and its consumers closer together.
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Real-World Use and Self-Reported Health Outcomes of a Patient-Designed Do-it-Yourself Mobile Technology System for Diabetes: Lessons for Mobile Health

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La experiencia del paciente y el diseño: el movimiento Maker.

La experiencia del paciente y el diseño: el movimiento Maker. | Co-creation in health | Scoop.it
Entre las actividades de la Escuela para Radicales Sanitarios del NHS, se llevan a cabo cada mes unas charlas bajo el lema #EdgeTalks. Hay una que nos ha llamado poderosamente la atención, ya que habla de epacientes, del movimiento maker y del diseño basado en el paciente. Su título es "The Maker Movement: a model for healthcare transformation?"y al final podéis ver la presentación completa.
 
La ponente de la sesión es Joyce Lee, pediatra, investigadora y diseñadora, y además autora del blog Doctor as designer. Un buen ejemplo de su actividad es este artículo, publicado en la web co.design, bajo el título "Why is healthcare design so terrible", en el que critica abiertamente el pésimo diseño de muchos productos sanitarios, con una utilidad muy alejada de las necesidades reales de los pacientes. 

 

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La réputation des laboratoires pharmaceutiques en chute libre

La réputation des laboratoires pharmaceutiques en chute libre | Co-creation in health | Scoop.it
Les associations de patients jugent sévèrement la réputation des industriels de la pharma. Selon, Patient View, qui effectue son enquête annuelle auprès de 1 463 groupes de patients dans 105 pays, …

Via Robert Courbé, Sandra Boyer, Lionel Reichardt / le Pharmageek
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How to perform the Heimlich manoeuvre on yourself (and yes, it's just as effective)

How to perform the Heimlich manoeuvre on yourself (and yes, it's just as effective) | Co-creation in health | Scoop.it

The  Heimlich manoeuvre, a short sharp burst of pressure to the abdomen to clear a blockage in the throat,  is just as effective when performed by the person who is choking, experts have found.

Doctors from the Royal Brompton Hospital in London warned that too often people were embarrassed when they started choking and sought privacy, often where nobody could help.

But Dr Nick Hopkinson said he and colleagues had discovered that the Heimlich manoeuvre could be self-administered, either by pressing the abdomen sharply onto a chair, or by delivering a similar thrust with their hand.

 

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The role of ego in academic profile services: Comparing Google Scholar, ResearchGate, Mendeley, and ResearcherID

The role of ego in academic profile services: Comparing Google Scholar, ResearchGate, Mendeley, and ResearcherID | Co-creation in health | Scoop.it

Academic profiling services are a pervasive feature of scholarly life. Alberto Martín-MartínEnrique Orduna-Malea and Emilio Delgado López-Cózar discuss the advantages and disadvantages of major profile platforms and look at the role of ego in how these services are built and used. Scholars validate these services by using them and should be aware that the portraits shown in these platforms depend to a great extent on the characteristics of the “mirrors” themselves.

The model of scientific communication has recently undergone a major transformation: the shift from the “Gutenberg galaxy” to the “Web galaxy”. Following in the footsteps of this shift, we are now also witnessing a turning point in the way science is evaluated. The “Gutenberg paradigm” limited research products to the printed world (books, journals, conference proceedings…) published by scholarly publishers. This model for scientific dissemination has been challenged since the end of the twentieth century by a plethora of new communication channels that allow scientific information to be (self-)published, indexed, searched, located, read, and discussed entirely on the public Web, one more example of the network society we live in.

 


Via Pierre Levy
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Mediocri di tutto il mondo vi siete uniti. E avete vinto

Mediocri di tutto il mondo vi siete uniti. E avete vinto | Co-creation in health | Scoop.it

Parla il filosofo canadese Alain Deneault, autore del longseller internazionale La mediocrazia: “L’unico antidoto è il pensiero critico”

 

Il mondo è dei mediocri. Sarà che è un assunto non difficile da sperimentare - e anche consolatorio per spiegarsi certi successi o insuccessi ugualmente distanti dalle vette del genio e dagli abissi dell’indegnità - ma il saggio La mediocrazia (Neri Pozza, pp. 239, € 18) del filosofo canadese Alain Deneault a un anno dall’uscita è ormai un longseller internazionale. E dire che in centinaia di pagine, dense di pensiero e di citazioni, ne ha davvero per tutti. In politica, da Trump a Tsipras, vede solo un «estremo centro», nell’impresa la «religione del brand», il «consumatore-credente», la «dittatura del buonumore». Nel lavoro «devitalizzato» individua la skill fondamentale nel «fare propria con naturalezza l’espressione: alti standard di qualità nella governance nel rispetto dei valori di eccellenza». E, in ogni ambito, rileva certi tic verbali come «stare al gioco», «sapersi vendere», «essere imprenditori di se stessi». Insomma, dice, «non c’è stata nessuna presa della Bastiglia ma l’assalto è avvenuto: i mediocri hanno preso il potere».  

 

Lo abbiamo incontrato a Milano dove ha parlato al Wired Fest, il festival dell’innovazione, altra parola che non manca nel vocabolario mediocratico. Oggi sarà al Circolo dei Lettori di Torino.  

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Louis Levy's curator insight, June 13, 9:30 AM

Très intéressant le livre doit être passionnant ! : "l'unique antidote à la médiocratie est la pensée critique"... il fallait le dire !

En français : https://www.amazon.fr/m%C3%A9diocratie-Alain-Deneault/dp/2895961956

Il faut cependant dire que les lecteurs sont très partagés, des enthousiastes aux très déçus...

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The Doctor Is In. Co-Pay? $40,000 - The New York Times

The Doctor Is In. Co-Pay? $40,000 - The New York Times | Co-creation in health | Scoop.it
For five-figure annual fees, boutique medical services offer the wealthiest Americans the chance to cut the line and receive the best treatment.
By NELSON D. SCHWARTZ
JUNE 3, 2017

SAN FRANCISCO — When John Battelle’s teenage son broke his leg at a suburban soccer game, naturally the first call his parents made was to 911. The second was to Dr. Jordan Shlain, the concierge doctor here who treats Mr. Battelle and his family.

“They’re taking him to a local hospital,” Mr. Battelle’s wife, Michelle, told Dr. Shlain as the boy rode in an ambulance to a nearby emergency room in Marin County. “No, they’re not,” Dr. Shlain instructed them. “You don’t want that leg set by an E.R. doc at a local medical center. You want it set by the head of orthopedics at a hospital in the city.”

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Nutella, vince Ferrero: stop alla campagna contro l'olio di palma

Nutella, vince Ferrero: stop alla campagna contro l'olio di palma | Co-creation in health | Scoop.it
Ferrero vince la battaglia legale contro Delhaize per la Nutella. La Corte d'appello di Bruxelles ha dato ragione al gruppo di Alba, capovolgendo la sentenza di primo grado, ed ha ordinato al gruppo della grande distribuzione belga di cessare la campagna sulla cioccolata spalmabile certificata «senza olio di palma». Ferrero accusava la campagna della società belga di essere «menzognera, ingannevole, e denigratoria» verso Nutella, che appunto, contiene olio di palma.

LE PENE
La nona camera della Corte d'appello di Bruxelles ha ordinato al gruppo Delhaize di interrompere la sua strategia di comunicazione sul cioccolato «senza olio di palma», pena sanzioni di 25 mila euro a violazione, fino ad un tetto massimo di un milione di euro.

La Corte belga ha invertito la decisione presa dai giudici di primo grado nel 2015, che invece dava ragione al gruppo Delhaize. Nella sentenza di circa 70 pagine, i giudici affermano infatti che Delhaize ha reso dichiarazioni comparative illegali perché non verificabili e quindi non obiettive. Secondo i giudici della Corte d'appello belga, Delhaize facendo credere che la propria cioccolata spalmabile fosse migliore per la salute poiché priva di olio di palma, ha in realtà alterato il comportamento del consumatore.

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How can pharma better understand and engage with patients? 

How can pharma better understand and engage with patients?  | Co-creation in health | Scoop.it

Consumers have access to more healthcare information than ever before, and the huge numbers behind online health-related activity are well documented. The impact of social media and its potential disruptions to (pharma) marketing are especially interesting when you look at some of the statistics;

42% of individuals viewing health information on social media look at health-related consumer reviews

32% of users post about their friends and family’s health experiences on social media

30% of adults are likely to share information about their health on social media sites with other patients

The trust, openness and value being placed on social media today by patients, and the demands this creates in terms of treatment and service, can no longer be ignored by healthcare providers and pharmaceutical companies alike. Patients are, rightly so, demanding more of a say in the type of care they get, the type of medicines that are being developed, how the medicines are going to be applied to them, and what the regulatory pathway should be.

When you put all of this together, it’s clear that there needs to be a brand-new level of deep engagement with patients. The good news is that all of this is coinciding with a revolution in digital technology and social media in the ability to reach people with particular characteristics all over the world.

The healthcare decision journey

As McKinsey discussed so eloquently back in May 2016, most pharmaceutical marketers are familiar with the concept of conducting market research to create a ‘sales funnel’ as a guide for marketing programs, where patients move from product awareness through to purchase and beyond. In retail, this linear journey has been superseded in recent years by the consumer decision journey (CDJ) which recognises that in a world where consumers are empowered by information, the process involved in making a purchase is more iterative.

For pharma companies seeking to understand how consumers make health decisions, the CDJ is enlightening. McKinsey see consumers undertaking what they call a CareFlow; mapping a patient’s journey from the first awareness of a problem to treatment, examining the factors guiding their decisions at each stage. These insights enable pharma marketers to engage with patients in ways that feel natural and personal.


Every point, branch and loop in the CareFlow is potentially a vital point of interaction; by understanding it, the marketer can understand the relative importance of points and (re)allocate investment and attention accordingly.

For example, in a sample of US patients with psoriasis, a CareFlow found that 58% had requested a specific brand of medication from their physician in the past year, twice as high as expected in the general population, this illustrates the importance of communicating with these patients before they visit a physician.

A CareFlow for depression revealed how long it took patients to seek care; often 6 months or more. The time lag represents an opportunity for pharma companies to accelerate the patient path to care. It also revealed how better management of patients’ expectations could improve treatment adherence.

Data and insight available from social media has a critical part to play in constructing such CareFlows, especially when placed in conjunction with other sources such as surveys, web-engine search trends, electronic medical records and consumer data. Once companies are committed to concepts such as CareFlow, the next imperative is to reshape their commercial approach accordingly, something that is likely to require a reallocation of marketing focus and investment. In a digital world, such concepts will be a crucial element of any successful commercial strategy.

What can social research provide in terms of patient insight?

In the digital era and with the boom in social media there are thousands of patient conversations happening daily. This isn’t breaking news, but how can we ensure we are making use of these conversations and gaining valuable patient insights from them? Social research goes beyond social listening, and whilst many assume it’s the same thing, intelligently conducted social research can uncover some great insights in double quick time.

So, what experiences have we gained here at MMRI?

Can you capture the emotion of the patient?

In Non-Hodgkin Lymphoma, we were able to capture the emotion of the patient in the moment of their diagnosis, which you cannot get via traditional research methodologies due to a reliance on memory recall. This insight helped our client to devise the right patient support services and these formed a key pillar of their brand launch strategy.

Does patient experience match HCP perception?

In Chronic Myeloid Leukaemia, we discovered that HCP perception on side effects related to one particular brand was not echoed by the patient population. For the client, this insight enabled them to refine their communication strategy in such a way that effectively changed HCP perceptions about their brand and its side effect profile.

What does MMRI Research give you?

Social research, when carried out by market research professionals, carries benefits that can add value, whether integrated with traditional methodologies or used in isolation, such as:

  • In the moment (capturing the emotion as it happens)
  • Spontaneous (unprompted and unbiased)
  • Conversational (comments and responses can be picked up from other users)

We go beyond social listening, capturing relevant, real-time conversations which are then analysed by our skilled research team to organise and understand themes, topics and sentiment, leading to actionable insights for our clients.


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Digital divide persists even as lower-income Americans make gains in tech adoption - PEW RESEARCH CENTER 

Digital divide persists even as lower-income Americans make gains in tech adoption - PEW RESEARCH CENTER  | Co-creation in health | Scoop.it

Nearly 30 years after the debut of the World Wide Web, internet use, broadband adoption and smartphone ownership have grown rapidly for all Americans – including those who are less well off financially. But even as many aspects of the digital divide have narrowed over time, the digital lives of lower- and higher-income Americans remain markedly different.

Roughly three-in-ten adults with household incomes below $30,000 a year don’t own a smartphone. Nearly half don’t have home broadband services or a traditional computer. And a majority of lower-income Americans are not tablet owners. By comparison, many of these devices are nearly ubiquitous among adults from households earning $100,000 or more a year.

 

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Could Be the Thyroid; Could Be Ennui. Either Way, the Drug Isn’t Helping.

Could Be the Thyroid; Could Be Ennui. Either Way, the Drug Isn’t Helping. | Co-creation in health | Scoop.it

“During the past four weeks, have you been tired? Been exhausted? Had difficulty getting motivated to do anything at all?”

These questions — which a substantial chunk of the population probably could answer in the affirmative — appeared on a questionnaire used in a major European study published recently in The New England Journal of Medicine.

The authors were researching the effectiveness of a drug that is widely, if controversially, used to treat older adults with subclinical hypothyroidism, better known as a slightly underactive thyroid.

So many Americans take that medication — levothyroxine (brand name Synthroid, among others) — that it topped the list of prescription drugs dispensed in the United States in 2015, according to the research firm QuintilesIMS Institute.

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Social capital and health: Does egalitarianism matter? A literature review

Social capital and health: Does egalitarianism matter? A literature review | Co-creation in health | Scoop.it
The aim of the paper is to critically review the notion of social capital and review empirical literature on the association between social capital and health across countries. The methodology used for the review includes a systematic search on electronic databases for peer-reviewed published literature. We categorize studies according to level of analysis (single and multilevel) and examine whether studies reveal a significant health impact of individual and area level social capital. We compare the study conclusions according to the country's degrees of economic egalitarianism. Regardless of study design, our findings indicate that a positive association (fixed effect) exists between social capital and better health irrespective of countries degree of egalitarianism. However, we find that the between-area variance (random effect) in health tends to be lower in more egalitarian countries than in less egalitarian countries. Our tentative conclusion is that an association between social capital and health at the individual level is robust with respect to the degree of egalitarianism within a country. Area level or contextual social capital may be less salient in egalitarian countries in explaining health differences across places.
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A Patient-Designed Do-It-Yourself Mobile Technology System for Diabetes Promise and Challenges for a New Era in Medicine

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State of Population Health Analytics

State of Population Health Analytics | Co-creation in health | Scoop.it

The 2016 State of Population Health Analytics (SOPHA) study revealed that the healthcare industry is making progress, but at a slower pace than expected. This is due to the challenge of integrating multiple sources and types of data and a focus on the data and technology to the detriment of people, processes and leadership. Larger healthcare organizations are making more progress than smaller ones due to their greater access to resources.

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Yes, You Can Measure White Privilege

Yes, You Can Measure White Privilege | Co-creation in health | Scoop.it
Whenever anyone slips the words “white privilege” into a conversation, it immediately builds an impenetrable wall. For some white people, the words elicit an uneasy feeling because, for them, the term is accusatory without being specific. It is a nebulous concept that seemingly reduces the complex mishmash of history, racism and social phenomena to a nonspecific groupthink phrase.

Via Dr. Susan Bainbridge
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Koen Mattheeuws's curator insight, April 17, 3:32 AM
Meten is weten. Tenzij je niet wil weten. Of enkel meet in functie van wat jij al meent te weten. 
Rosemary Tyrrell, Ed.D.'s curator insight, April 17, 11:46 AM
Worth a read.
 
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The Big Kardia Review and the Evolution of Digital Health #hcsmeufr

The Big Kardia Review and the Evolution of Digital Health #hcsmeufr | Co-creation in health | Scoop.it
Kardia was the very first health sensor I have ever used, and I was fortunate enough to follow its evolution. Now, the company, AliveCor sent me their latest version of the Kardia Mobile heart health monitor. Check out my review below! The progress of a health sensor Alivecor has a special meaning to me, since …

Via Lionel Reichardt / le Pharmageek, Pharmacomptoir / Corinne Thuderoz
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Making Sense of DTC Ad Spending

Making Sense of DTC Ad Spending | Co-creation in health | Scoop.it

About this time every year, I get data from Kantar Media and Nielsen regarding how much money the U.S. pharmaceutical industry spends on direct-to-consumer (DTC) advertising.

The data I’m most interested in are the total spend for the year and what portion of that is digital versus TV. But it can be difficult to ferret out that information from the two different sources, which often report different numbers.

Let’s look at the total spend first.

 

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Via Pharma Guy
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