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How a top Republican became a champion for the NIH

How a top Republican became a champion for the NIH | The patient movement | Scoop.it
Oklahoma Republican Tom Cole had little connection to health care policy before being appointed to lead a panel that funds medical research programs.
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AGE General Assembly and Annual Conference 2015 looked at a human-rights based approach to ensure dignified ageing - AGE Platform Europe

AGE General Assembly and Annual Conference 2015 looked at a human-rights based approach to ensure dignified ageing - AGE Platform Europe | The patient movement | Scoop.it
AGE Platform Europe is a European network of around 150 organisations of and for people aged 50+; representing directly over 28 million older people in Europe.
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"2016 may see more rights for patients ..

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OPEN INNOVATION AT JANSSEN : “Nobody can solve today’s major healthcare problems alone”

OPEN INNOVATION AT JANSSEN : “Nobody can solve today’s major healthcare problems alone” | The patient movement | Scoop.it
a visit at the Janssen pharmacy R&D centre in Val De Reuil - Open Innovation - Janssen Healthcare Innovation - JLABS
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lets add patient groups to the slide

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https://www.youtube.com/watch?v=2Ilb9UhrGe0

https://www.youtube.com/watch?v=2Ilb9UhrGe0 | The patient movement | Scoop.it
What mental health services are there? And how do they fit in with other health and public services? Watch our animation to find out more. Every year, one in four of us will experience a mental health problem. The experience will be different for each of us, as will the type of support we need.
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Great little video fromKong'sFund on mental health

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Breast cancer charity calls on Roche to drop price of Kadcyla - News - pharmaphorum

Breast cancer charity calls on Roche to drop price of Kadcyla - News - pharmaphorum | The patient movement | Scoop.it
Breast cancer charity calls on Roche to drop price of Kadcyla - News Roche is being called on to drop the price of its breast cancer drug Kadcyla in the UK so that patients can keep receiving the treatment. The drug is set to be 'de-listed' from England's
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More on cancerdrugs and pricing - this time it is Roche's Kadcyla

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3676_patient-centricity%20white%20paper_sept%202015%20final.pdf

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B-I on measuring patient centricity within companies

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PatientView's curator insight, September 16, 2015 4:15 AM

Today Patientview'ssurvey of patient groups  Boehringer Ingelheim 30th out of 37 companies for patient-centricity for 2014. Will keep you posted on progress to see if B-I's strategy is working!!

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Is Alzheimer's Disease Contagious? | Alzheimer's Reading Room

Is Alzheimer's Disease Contagious? | Alzheimer's Reading Room | The patient movement | Scoop.it
In the Alzheimer's Reading Room we provide the answers to the most difficult problems and issues faced in Alzheimer's and dementia care.
PatientView's insight:

Was the latest newsreports about contagious Alzheimer's  irresponsible journalism?

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Should patients be in charge?

Should patients be in charge? | The patient movement | Scoop.it
Please click to launch this digital edition.
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Should patients be in charge

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Understanding Patients' Needs with Social Media Analytics

Understanding Patients' Needs with Social Media Analytics | The patient movement | Scoop.it

Among the 50 largest drug makers in the world, more than half still aren’t actively using social media to engage healthcare consumers or patients. Most of them primarily use social media as a broadcasting channel, and no more than 10 are on Twitter, Facebook or YouTube.

Even with drug makers’ recent increases in digital spending, the pharmaceutical industry is repeatedly said to be a laggard in adoption of social media.

Drugmakers’ common excuse for remaining social media wallflowers is largely due to the regulatory uncertainty and the doubts on how to measure social ROI.

1/ The rise of the empowered patient

With the role of social media rapidly expanding, patients are increasingly turning to popular social networks, such as Twitter, Facebook, YouTube, blogs and forums obtaining and sharing information related to their health.

In the US, for example, over one third of consumers manage their own health and are using social media to help them make important healthcare decisions.

The consequent empowerment of the patient in making decisions around their treatment has led them to be more aware and have a greater say in the treatment process.

But it’s not just patients who go to social media to voice their opinions. The pharma industry has multiple stakeholders who actively research and discuss online, including patients, physicians, payers, caregivers, providers and advocacy groups.

This trend only heightens the imperative need for pharmaceutical companies and regulators to take notice and contribute to the overall healthcare discussion, particularly to the appropriate use of medicines.

But how do you actually know what physicians are saying about your drug?
Can you identify your patients’ primary concerns about your market leading product?

What are the conversation themes around managing the disease?
How does the online reputation of your brand compare to competitors?
Are patients switching brands and if so, why?

2/ Using social media as a research tool

The most immediate benefit that social media has to offer pharmaceutical companies is as a research tool.

The answers to the questions above require a more proactive embrace of social media analytics tools by pharmaceutical manufacturers.

Social media analytics tools, such as Brandwatch Analytics, can mine not only Twitter but also public forums, blogs, news sites, Facebook and other social networks to uncover patients and physicians’ sentiments and opinions.

One of our clients, Creation Healthcare, did exactly such a thing not too long ago. They indexed half a million healthcare professional profiles across thousands of sites using Brandwatch Analytics to understand how treatments and products are perceived by those who may prescribe them every day.

The online market research consultancy was able to spot healthcare trends and concerns months before others did. Offering unrivaled insight into the views of healthcare professionals, Creation Healthcare’s research business attracted six times more clients than before.

Identifying the opinions of healthcare professionals and patients is, indeed, a complicated process, particularly because of the amount of noise and spam surrounding pharmaceuticals. With boolean operators and rules, you can filter out spammy websites and irrelevant views.

3/ Using social media to foster discussions with your stakeholders

Understanding the kind of people who make up the conversation in your niche can prove far more insightful than listening only to those who mention your product or brand.

In a recent report we analyzed thousands of mentions online using social media analyticsto understand people’s attitude towards HIV treatment and to inform targeted messaging.

Their target audience is often seen as being the healthcare professional. But when analyzing all HIV discussion on social media, it turns out it’s the patients, caregivers and those that actually aren’t directly affected by HIV who offer the most powerful insights.

The general public spoke nearly three times more about HIV treatment than healthcare professionals, suggesting a general interest in the topic and that online influencers may differ from offline.

Diving deeper into this data, we noticed that the different stakeholders are chatting about HIV in entirely different places.

Data like this could dramatically impact how a drug manufacturer develops its communication strategies and targets its messaging.

4/ Building tailored marketing strategies

As shown below, social media analytics can be applied at various stages of a drug lifecycle; right from your drug discovery stage (understanding unmet needs) to the launch (improving your brand messaging) to the maturity stage (monitoring brand reputation and intimately connecting patients and physicians).

Insights generated during each stage can be utilized across all departments in your company.

If you’re still analyzing the conversation about your own brand or products, then now is the time to rethink your social media activities.

While social media is not a panacea, it provides an arguably underused opportunity across the business to research, understand and boost discussions with all healthcare consumers.

There’s no such thing as having a remarkable drug without having tailored strategies to appeal to your own target audience.

Forget the mass market, segment and evaluate healthcare conversations by the different stakeholders. Find out what they are talking about online and how your organization can fit into that.



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Pascal Kerhervé's curator insight, July 29, 2015 9:39 AM

Social media has a rising role in collecting insights to understand the patients' unmet needs or to improve your brand messaging, are you using it?

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Dutch pioneers take visionary Parkinson’s healthcare to US

Dutch pioneers take visionary Parkinson’s healthcare to US | The patient movement | Scoop.it
Leading Dutch neurologists sign agreement to spread innovative Parkinson's healthcare initiative to West Michigan, US, during a tour with the royal couple.
PatientView's insight:

Europe can teach US some things!!

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Parkinson's For One Day (with images, tweets) · SusannahFox

Gretchen Church was my partner on Saturday, June 6, 2015, teaching me how to manage life with the physical challenges that come with Parkinson's disease. Our tweets tell the story...
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Parkinson's fr one day 

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Impatient patients demand drug fix

Impatient patients demand drug fix | The patient movement | Scoop.it
Two major groups surprised industry with their specific demands for “a European approach to the market.”
PatientView's insight:

Patients take the initiative on drug pricing

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EuroMedLab 2015: Placing patients in charge of their health | MedTech Views

EuroMedLab 2015: Placing patients in charge of their health | MedTech Views | The patient movement | Scoop.it
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Self-care in the making 

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PatientView study on biosimilars presented at European Commission workshop

PatientView study on biosimilars presented at European Commission workshop | The patient movement | Scoop.it
On 6 October 2015 the European Commission´s  Directorate General for Internal Market, Industry, Entrepreneurship and SMEs (DG GROW), organized a workshop on Access to and Uptake of Biosimilar Medicinal Products. The objective of the workshop were to gather all relevant interested parties in order to facilitate a multi-stakeholder exchange of information, experiences and reflection on…
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Annick Valentin Smith's curator insight, December 16, 2015 1:29 PM

SURVEY RESULTS :

Little awareness of biosimilars among patients

Little understanding of biosimilars among patients

Need for clear, understandable patient-focused information

Patient groups and internet are  the two most important sources of information for patients

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Junior doctors' strike: what do the experts think?

Junior doctors' strike: what do the experts think? | The patient movement | Scoop.it
Junior doctors are due to start a series of strikes starting on December 1st, with two days of full walk-out on December 8 and December 15th. The controversial plans for the first such action in the history of the NHS have sparked a wide range of views
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Patient Association on the forthcoming junior doc strike in UK

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Roche bemoans price distortion and 'Big Bad Pharma' attacks - Articles - pharmaphorum

Roche bemoans price distortion and 'Big Bad Pharma' attacks - Articles - pharmaphorum | The patient movement | Scoop.it
Roche bemoans price distortion and 'Big Bad Pharma' attacks - Articles Just how much does Kadcyla cost in the UK? Roche tells Andrew McConaghie that inaccurate reports of its price have distorted the debate.
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And here is Roche's response to teh call to cut drug prices

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34% of Kids Eat Fast Food on a Given Day, Study Says

34% of Kids Eat Fast Food on a Given Day, Study Says | The patient movement | Scoop.it
New federal data reveal that in 2011-2012, more than one third of kids and adolescents ate fast food on a given day
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Official launch of the New Zealand Multiple Sclerosis Research Trust | MS International Federation

Official launch of the New Zealand Multiple Sclerosis Research Trust | MS International Federation | The patient movement | Scoop.it
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Health Care Coverage and Access for Men, 2013-2015

Health Care Coverage and Access for Men, 2013-2015 | The patient movement | Scoop.it
This Visualizing Health Policy infographic provides a snapshot of men’s health care and insurance coverage issues, including health status, access to care, and use of services. It compares the uninsured rates of men and women; their cost barriers to care; their connection to clinicians; and...
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Men and access to helathcare in the USA infographic

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Me, Not HAE

Me, Not HAE | The patient movement | Scoop.it
Through May 30, visit Shire's www.MeNotHAE.com to make a wish to support the HAE community and grow the HAE Wish Tree!
PatientView's insight:

This looks a good initiative backed by pharma 

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Visualize the Effects of Lupus on the Body

Visualize the Effects of Lupus on the Body | The patient movement | Scoop.it
Lupus is an autoimmune disease that can affect almost any part of the body, especially the skin, blood, joints, kidneys, heart, lungs, and brain. Learn more.
PatientView's insight:

Infographic -Lupus explained from Healthline  

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Global Voice for Rare Disease Patients Launches Today: Rare Diseases International - NORD (National Organization for Rare Disorders)

Global Voice for Rare Disease Patients Launches Today: Rare Diseases International - NORD (National Organization for Rare Disorders) | The patient movement | Scoop.it
        Madrid and Washington, D.C.—May 28, 2015—The global voice for rare disease patients launches today.  More than 60 patient representatives from 30 countries are gathering in Madrid, Spain for the inauguration of Rare Diseases International (RDI) and to adopt a joint declaration to advocate for rare diseases as an international public health Read more >
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Physician 'aid in dying': California Medical Association removes opposition to bill

Physician 'aid in dying': California Medical Association removes opposition to bill | The patient movement | Scoop.it
Setting a nationwide precedent that might influence other states, the California Medical Association announced it has reversed its decades-long opposition to legislation that allows physicians to help seriously ill patients end their lives.
PatientView's insight:

A milestone in the right to die debate 

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